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Survivors of a silent epidemic: The learning experience of college students with a history of traumatic brain injury

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Heather A. Schlessman
HOWARD JACOBS, PhD., Faculty Mentor and Chair
DIONNE FELIX, PhD., Committee Member
BONNIE TODIS, PhD., Committee Member
Barbara Butts Williams, PhD., Dean, School of Education
A Dissertation Presented in Partial Fulfillment
Of the Requirements for the Degree of
Doctor of Philosophy
Capella University
July 2010
UMI Number: 3412488
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UMI 3412488
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© Heather A. Schlessman, 2010
A significant proportion of young adults experience a traumatic brain injury (TBI)
every year, and students with this history are becoming a growing presence on college
campuses. A review of the literature revealed very little research exploring the learning
experiences of college students with a history of traumatic brain injury. The purpose of
this study was to give voice to students living this experience and to help the students
communicate as much as they wished to share about their experience with learning in
college. This was a qualitative study utilizing a phenomenological methodological
framework and purposive sampling in which six college students with a history of TBI
were identified and their experiences with learning in college were collected and
analyzed looking for emergent themes. The students also had the opportunity to take
pictures of what they believed exemplified their experience and these pictures were used
to help the students describe their experience and to add richness and depth to the study.
This research study provided rich, detailed information about the learning experiences of
college students with a history traumatic brain injury. The experiences of the coresearchers have validated many of the sequelae of TBI found in the literature review.
However, there were new findings, regarding which, sparse if any information was found
in the literature.
This dissertation is dedicated to my husband, Mark Schlessman and my
children, Benjamin, Rebekah, Carie, and Nathaniel Schlessman. To my husband
Mark, your unending support enabled me to complete this work. You always
believed in me and this is a journey we took together. To my son Benjamin, my
daughter Rebekah, and my daughter-in-law Carie, your continuous work in
understanding and supporting your brother touches me deeply. And to Nathaniel,
who lives this experience every day, you were the inspiration for this work, and
continue to be an inspiration in how to live life to the fullest.
I have had a wonderful dissertation committee who gave me exactly the
support I needed. My heartfelt gratitude goes to Dr. Howard Jacobs, Dr. Dionne
Felix, and Dr. Bonnie Todis. Dr. Todis gave me wonderful guidance both with her
expertise in brain injury, and in analyzing and describing the experience. Dr. Felix
was a wonderful editor. In particular Dr. Jacobs, the chair of my committee, was
always there with words of encouragement and wisdom. I also had wonderful
support from three of my fellow faculty: Carol Thorn, Michelle Smith, and Sarah
Morris. Finally, the co-researchers in this study were such a gift. They all shared
their experiences so honestly. It was an honor to hear and tell their stories.
Table of Contents
Introduction to the Problem
Research Questions
Previous Research
Overview of TBI
The Challenges of TBI
Self-awareness and Self-direction
Research Traditions and Structures
Phenomenological Inquiry
Heuristic Hermeneutic Research
Photo Elicitation
Description of Methodology
Research Design and Data Management
Data Presentation and Analysis
Rationale for the Present Study
Discussion of the Findings
Limitations of the Study
Recommendations for Further Research
Applications to Practice
Introduction to the Problem
Approximately 180-200 out of every 100,000 children will suffer some degree of
severity of traumatic brain injury (TBI) every year (Fletcher, Ewing-Cobbs, Francis,
Levin, 1995; Kraus, 1995; Yeates, 2000). Another way to view these statistics is to
understand that “One of every 30 newborn children will sustain a significant brain injury
before 16 years of age” (Fletcher et al., 1995, p. 3). A majority of these children survive
the injury and emerging evidence is pointing to the fact that many of these will suffer
long-term consequences to their learning ability (Fletcher et al., 1995; Semrud-Clikeman,
2001). According to the United States Department of Education, Office of Special
Education Programs’ (OSEP) Individuals with Disabilities Education Act (IDEA)
website traumatic brain injury has been defined as:
an acquired injury to the brain caused by an external physical force, resulting in
total or partial functional disability or psychosocial impairment, or both, that
adversely affects a child's educational performance. Traumatic brain injury
applies to open or closed head injuries resulting in impairments in one or more
areas, such as cognition; language; memory; attention; reasoning; abstract
thinking; judgment; problem-solving; sensory, perceptual, and motor abilities;
psychosocial behavior; physical functions; information processing; and speech.
Traumatic brain injury does not apply to brain injuries that are congenital or
degenerative, or to brain injuries induced by birth trauma. (2006, Query: traumatic
brain injury, ¶ 1)
For the child who has experienced a TBI and their family the journey following
the injury can be very convoluted and full of pitfalls. The long-term consequences of the
injury will be the ultimate responsibility of the family with hopefully support primarily
from the school system. However, children may be seen in the emergency room for the
injury with no further communication to their primary physician or their school. Those
children who experience a severe enough head injury to warrant admission to the hospital
may never be referred for rehabilitation services, and those children “may not be referred
to their local school special education department for continued special education”
(Savage, Pearson, McDonald, Potoczny-Gray & Marchese, 2001, p. 49).
A traumatic brain injury is one of the categories of disability identified by the
Individuals with Disabilities Education Act (IDEA). A child who needs special education
due to this injury qualifies for an Individualized Education Plan (IEP) (U.S. Department
of Education, 2006). Ideally, the IEP will focus on “what the student needs to learn…,
how these goals and objectives are best learned…, and where this learning will best take
place” (Savage et al., 2001, p. 50). Glang, Tyler, Pearson, Todis and Morvant (2004)
have voiced concern that not only are these students being under-identified but their
educational needs are not being met either.
An increasing number of these students will eventually attend college, and there is
little research regarding this experience (Beers, Goldstein & Katz, 1994). Community
colleges with an open enrollment policy will accept any student who has obtained a high
school diploma or GED (Herideen, 1998). These students will be coming to college with
a goal of learning. Learning, which has been described as a “change in an individual’s
disposition or capabilities which could be observed in the form of permanent behavioral
change”, is one of the activities impacted by TBI (Brookfield, 1984, p. 61).
Background of the Study
Drew (2001) conducted group sessions with students in an urban university to
explore “student views on their learning outcomes, and…factors that they considered
influenced their learning” (p. 309). Both the context of the learning environment and
how the student interacts with this context were found to affect student learning. The
context, which was imposed on the student, consisted of three areas: how the course was
organized, course resources and facilities; how student assessment occurred; and learning
activities and teaching methods. The factors that were student driven included selfmanagement; motivation and need; understanding; and support. These student factors or
themes can be used to help categorize the difficulties encountered by students with a TBI
identified in previous research.
Self-management consisted of a student taking responsibility for his or her own
learning, the ability to act autonomously (Drew, 2001). This concept involved time
management and the ability to set goals. It also involved being able to plan and
coordinate the completion of course activities. This would also require that the student
have the ability to determine what resources were needed to meet the goals and be able to
identify where to obtain those resources. The ability to set and achieve goals was often
compromised in people with a history of TBI (Hart & Evans, 2006).
Motivation and needs included both the learning and personal needs of the
student. The learning needs of the student included learning style, understanding of the
relevance of what was being learned and previous experience with what was being
learned. The personal needs of the student ranged from monetary issues and health issues
to family issues (Drew 2001). Students with a history of TBI may have many personal
issues affecting their ability to learn. In a review of the literature regarding mild TBI and
anxiety, there was found to be a detrimental interaction between the two, although the
authors concluded that further research was needed (Moore, Terryberry-Spohr & Hope,
Understanding knowledge could be viewed as either surface, such as memorizing
facts, or deep, which focused more on understanding concepts and principles. The
students saw “awareness and reflection as being important to understanding” (Drew,
2001, p. 315). Moran, Nippold and Gillon (2006) found working memory impairment in
persons with TBI that negatively affected their ability to comprehend figurative language.
Cognitive deficits were also found to persist over time in a proportion of students with
TBI (Dennis, Wilkinson, Koski, & Humphreys, 1995). Bach and David (2006) described
self-awareness deficits in persons with a history of TBI as “ranging from 45% to 97%”
(p. 397). Through a review of the literature regarding TBI and self-awareness deficits,
they found “lack of social self-awareness predicts behavioural disturbance in acquired
and traumatic brain injury independent of cognitive and executive function” (p. 397).
Support consisted of both academic and personal support. Support required the
student to communicate with the instructor and fellow students to obtain “encouragement
and feedback” (Drew, 2001, p. 319). Dahlberg et al. (2006) found people with a history
of TBI often had more difficulty with social communication skills that impacted their
quality of life and a mild TBI was found to subtly but negatively affect the quality of
attention (McIntire et al., 2006). Allerdings and Alfano (2006) found a “significant
impairment in the recognition of facial emotions” (p. 193) in a group of persons with a
history of moderate to severe TBI, which negatively affected their psychosocial
functioning. Turkstra, Dixon and Baker (2004) found “Adolescents with TBI manifested
impairments in social cognition relative to their peers” (p. 250).
As demonstrated in the research, TBI students may have detrimental
consequences from their injury that negatively affect their learning. These areas include
issues involving self-management; motivation and needs; understanding knowledge; and
support. Yet, none of the previous research investigates the personal experiences of
students with a traumatic brain injury upon entering college.
Statement of the Problem
A significant proportion of children experience a TBI every year. The Individuals
with Disabilities Education Act (IDEA) has only officially recognized these students for
the last seventeen years and many of these are not receiving special services (Glang,
Tyler, Pearson, Todis, & Morvant, 2004; Savage, Depompei, Tyler, & Lash, 2005). The
highest incidence of TBI occurs in the age group of 15 years-of-age to 24 years-of-age
with many of these students preparing to enter college (Traumatic brain injury in the
United States: A report to Congress, 1994).
Because of open enrollment, students with the history of a TBI “are a growing
presence on college and university campuses and within other postsecondary programs”
(Ruoff, 2001, p. 1). These students may or may not choose to identify themselves as
having a disability for many reasons, and even if they do the accommodations offered by
the office of disability support services may be different than those they used during
primary and secondary education (Getzel & Wehman, 2005). The problems faced by
students with a history of TBI in the transition to college, and more specifically with
learning in college, can only be truly known by those students themselves. To understand
this experience and to develop the most appropriate interventions that would be helpful to
these students, it is necessary to understand what difficulties the students are
experiencing from their viewpoint. The problem is there is very little information found
in the available research regarding this viewpoint.
Purpose of the Study
The purpose of this study was to give voice to students living this experience and
to help the students communicate as much as they wished to share about their experience
with learning in their transition to college. This information will also be helpful for
future students with TBI and their families who are wondering what the college
experience may be like. The results of this research will be published for the use of
students with TBI, their families and schools to help elucidate what this experience may
be like.
Research Questions
The primary researcher of this study is the parent of a teenager who experienced a
TBI in childhood. This researcher is also a pediatric nurse practitioner who came to the
shocking realization two years ago, when her son was diagnosed with posttraumatic
epilepsy, that she knew very little about TBI and had been given very little information
from anyone involved with his care. While researching the subject she found that the
learning difficulties her son has faced are very common to students with TBI. The
psychosocial consequences of TBI make learning more of a challenge than it is for
students with no history of TBI. This researcher found no literature that could be helpful
to parents or high school students with a history of TBI in preparation for the college
learning experience. “The task of the initial engagement is to discover an intense interest,
a passionate concern that calls out to the researcher” (Moustakas, 1990, p. 27).
Examining the learning experience of college students with a history of TBI became this
researcher’s passion with the goal of transforming the results of this study into helpful
information for future students and their families.
The primary research question for this study was “How do college students with a
history of TBI perceive and describe their learning experience?” A secondary question
was “What are the factors that affect their learning experiences, both positively and
Nature of the Study
This was a qualitative study utilizing a phenomenological methodological
framework and purposive sampling in which six to eight college students with a history
of TBI were identified and their experiences with learning in college were collected and
analyzed looking for emergent themes. The goal of this research was to allow the essence
of this experience to emerge using open-ended questioning in interviews and the words of
the students themselves (Creswell, 1998). The number of the sample in this research was
kept small to allow for in-depth analysis; and due to the small number, data was gathered
from the co-researchers in several ways (Waltz, Strickland, & Lenz, 2005). Language is
the method by which a person shares their interpretation of their experiences (Moran &
Mooney, 2002). The students also had the opportunity to take pictures of what they
believed exemplified their experience and these pictures were used to help the students
describe their experience and to add richness and depth to the study. According to Waltz,
Strickland, and Lenz (2005) describing the number of sampling units in a proposal gives
a better idea of the data to be collected than simply referring to the number of coresearchers. “A sampling unit can be an interview, a day of observation or a single unit
of observation…” (p. 221). Including the photos, journals and interviews there were
seventeen sampling units. The “first and only reference point” of this study was the
subjective meaning given to the accounts of the students (Scott, 1996, p. 66).
Definition of Terms
There are several terms from the traumatic brain injury and the phenomenological
literature that need defining related to this study.
Bracketing. Once the Epoche has taken place, what is left of the phenomenon is
bracketed, in other words this is now the sole focus of the research and is viewed from as
many angles as possible (Moustakas, 1994). It is modeled after the mathematical practice
of bracketing certain parts of equations to signify a different treatment. This is also
referred to as phenomenological reduction, a way to exclude the “experiences, biases or
prejudices of researchers” (Walters, 1995, ¶ 67).
Co-Morbid. At least two medical conditions that occur simultaneously and are
usually independent from each other (Merriam-Webster Online Dictionary, 2010).
Eidetic Intuition. When there is a focus on a phenomenon a deeper understanding
is achieved that “moves beyond the obvious qualities observed”; this is eidetic intuition
(Tincher, 2005, p. 11).
Eidetic Reduction. “The act which leads from particulars to universal ‘pure’
essences” is eidetic reduction (Speigelberg, 1984, p. 752). The reduction does not try to
identify the boundaries of a phenomenon, but instead “attempts to offer iconic images of
the phenomenon” (van Manen, 2002, ¶ 5).
Epoche. This term was used by Edmund Husserl to indicate “the act by which the
general thesis of belief in factual existence characteristic of the natural attitude is
suspended…or turned off…” (Speigelberg, 1984, p. 743). According to Moustakas
(1994) in the Epoche “the everyday understandings, judgments, and knowings, are set
aside, and phenomenon are revisited, freshly, naively in a wide open sense…” (p. 33).
Essence. The essence of something is “universal, eternally unchanging over time”
(Walters, 1995, ¶ 20). It is “immanent…and grasped in an act of reflective
consciousness” (¶ 21).
Executive Functions. Cognitive processes that included “judgment and problem
solving (involved in sorting information according to importance), manipulating
information in working memory, selective retrieval of important information from
memory, and inhibition of less important or irrelevant details” (Chapman et al., 2004, p.
39). It also involves “flexibility in problem solving” and “self-monitoring and selfregulation” (Brookshire et al., 2004, p. 62).
Glasgow Coma Scale. This was a “standardized method of assessing levels of
consciousness, based on eye, verbal and motor response” which totaled 15 possible points
(Iankova, 2006, p. 30). A total of four points are possible based on eye opening ability, a
total of six based on level of motor response and a total of five based on best verbal
response (Fischer & Mathieson, 2001).
Intention. The word intention in phenomenology does not mean the usual use of
this word, planning to do something. This term refers instead to a thought process, a
“conscious relationship we have to an object” (Sokolowski, 2000, p. 8). “Every act of
consciousness is directed toward an object of some kind” (p. 9). Empty intentions are
directed at something that is physically not present, while filled intentions are directed
towards something that is present.
Lifeworld. Edmund Husserl and Maurice Merleau-Ponty discussed this term in
reference to “the encompassing world of our immediate experience which can be
recovered from the world as given to scientific interpretation by a special type of
reduction” (Spiegelberg, 1984, p. 747). It is “not just a physical environment, but the
patterned ways in which a physical environment is functionally meaningful within some
activity” (Agre & Horswill, 1997, ¶ 1). Although a faculty member and a student both
inhabit a college, their lifeworld within that college is more than likely very different
because of their experiences and functions within that environment.
Mild Brain Injury. The Centers for Disease Control and Prevention (CDC) (2006)
workgroup on mild traumatic brain injury (MTBI) defined MTBI as:
The occurrence of injury to the head arising from blunt trauma or acceleration or
deceleration forces with one or more of the following conditions attributable to
the head injury:
Any period of observed or self-reported:
1. Transient confusion, disorientation, or impaired consciousness;
2. Dysfunction of memory around the time of injury, or
3. Loss of consciousness lasting less than 30 minutes
4. Observed signs of other neurological or neuropsychological dysfunction, such
a. Seizures acutely following injury to the head;
b. Irritability, lethargy, or vomiting following head injury, especially
among infants and very young children; or
c. Headaches, dizziness, irritability, fatigue, or poor concentration,
especially among older children and adults. (p. 3)
The CDC (2006) further described an MTBI as consisting of one or more of the
following conditions after a brain injury:
1. Confusion or disorientation
2. Loss of consciousness up to 30 minutes
3. Neurological or neuropsychological problems, and/or
4. Score of 13 or higher on the Glasgow Coma Scale (GCS) (p. 7).
Moderate Brain Injury. A moderate brain injury involved a skull fracture and
“loss of consciousness or posttraumatic amnesia lasting 30 minutes to 24 hours” (Ashe &
Mason, 2001, p. 27).
Post-Traumatic Amnesia (PTA). The Oregon Brain Injury Resource Network
(n.d.) defined PTA as:
A period of hours, weeks, days or months after the injury when the patient
exhibits a loss of day-to-day memory. The patient is unable to store new
information and therefore has a decreased ability to learn. Memory of the PTA
period is never stored; therefore, things that happened during that period cannot
be recalled. (Glossary of Terms-P)
Severe Brain Injury. A severe brain injury involved an intracranial hematoma, a
brain contusion, and “loss of consciousness or posttraumatic amnesia lasting more than
24 hours” (Ashe & Mason, 2001, p. 27).
Traumatic Brain Injury (TBI). Traumatic Brain Injury (TBI) was defined by the
Oregon Brain Injury Resource Network (n.d.) as:
Damage to living brain tissue caused by an external, mechanical force. It is
usually characterized by a period of altered consciousness (amnesia or coma) that
can be very brief (minutes) or very long (months/indefinitely). The specific
disabling condition(s) may be orthopedic, visual, aural, neurologic,
perceptive/cognitive, or mental/emotional in nature. The term does not include
brain injuries that are caused by insufficient blood supply, toxic substances,
malignancy, disease-producing organisms, congenital disorders, birth trauma or
degenerative processes. (Glossary of Terms-B)
Assumptions and Limitations
For this phenomenological research study, an attempt was made to bracket
existing beliefs and expectations. The researcher believed that it was impossible to
entirely separate oneself from these, however an effort was made to become aware
enough of these personal attributes to consciously separate them from what was learned
from the students (Moran & Mooney, 2002). Lowes and Prowse (2001) described the
need for the researcher to fully describe personal preconceptions and how they believe
those may have affected the interview process.
1. It was assumed that the students wanted to honestly share their experiences as
fully as possible. However, a limitation may have been a decreased ability for
self-assessment and reflection on the part of the co-researchers both due to
consequences of the TBI and the energy consumed just attending school
(Ziino & Ponsford, 2006.
2. It was assumed that the students were truthful in their ability to meet the
research criteria, and that their participation was voluntary.
3. It was assumed that data that was collected in the artificial environment of an
interview accurately represented the lived experiences that occurred outside
the interview (Scott, 1996).
4. It was assumed that the methodological framework of phenomenology was a
viable form of research and was an appropriate framework to use in answering
the research question.
5. It was assumed that adherence to this framework resulted in an unbiased
representation of the student’s experiences, and that the interview process
adhered to a moral code of human science research.
External validity would mean that the essences found in this study would also be
transferable to other people in other situations. Phenomenology typically does not strive
for this result due to the small group of participants. The results of this study were
therefore not considered generalizable (Waltz, Strickland, & Lenz, 2005).
Organization of the Remainder of the Study
Chapter 2 will review the literature concerning topics pertinent to this study.
These topics will include the incidence, overview and pathophysiology of TBI; the
legislation related to TBI; the influences that affect the outcomes for TBI survivors; and
student difficulties and the transition to college. The literature will also be reviewed
concerning concepts of self-awareness and the experience of college for students in
general. This review provided a frame of reference in understanding the concept of
traumatic brain injury, the concepts of self-direction and self-awareness.
Chapter 3 will describe the design and methodology of this study. The use of
photography in qualitative research will also be explored. Chapter 4 will present the data
obtained in the research and the analysis of the data. Chapter 5 will provide the
conclusions drawn, and the implications and future recommendations.
The goal of this study was to develop, with the help of the co-researchers, a
picture of what the experience of learning in college is like with a history of traumatic
brain injury. This research combined two very broad areas of interest: traumatic brain
injury and adult learning. Therefore, this literature review will include a history of
previous research in the field of TBI; an overview of TBI; difficulties encountered by
students with a history of TBI; an overview of the college transition process for students
with disabilities; legislation regarding college students with TBI; and an overview of
adult learning theory, particularly self-direction and self-awareness.
Previous Research
Many aspects of traumatic brain injury have been researched: physiological
consequences; psychosocial and mental health issues; cognitive functioning;
rehabilitation; family system functioning; the attitudes and perceptions of both the
survivors and the public; and qualitative research looking into the experiences of
survivors of TBI regarding their quality of life, the use of technology assistance and their
needs. The following is a brief overview of the recent research specifically focused on
issues related to learning that will demonstrate the breadth of the research in contrast to
the paucity of research regarding the lived experiences of students with TBI.
Fatigue secondary to the extra effort required to maintain mental equilibrium was
found by Ziino and Ponsford (2006) to be a physiological consequence of TBI. Fatigue
was also found secondary to the student needing to continuously work to access their
rights (Goode, 2007). A positive relationship between TBI and chronic pain has also been
found which would also contribute to fatigue and act as a distraction to a student (Andary
et al., 1997; Bryant, Marosszeky, Crooks, Baguley & Gurka, 1999). Cantor et al. (2005)
described the extensive literature that documented depression and anxiety as “common
sequelae of traumatic brain injury” (p. 527).
Difficulties with social communication skills, which negatively impacted the
quality of life, were found in people with a history of TBI by Dahlberg et al. (2006).
Related to social communication was the concept of self-awareness, and there was found
to be a deficit of self-awareness in a significant proportion of persons with a history of
TBI (Bach & David, 2006; Goverover, Johnston, Toglia, & Deluca, 2007). Allerdings
and Alfano (2006) explored the ability of people with a history of TBI to recognize facial
emotions in others and found a significant impairment, which they believed, negatively
impacted their psychosocial functioning. Snead and Davis (2002) also found that the
more negatively people with TBI viewed themselves, the less involved they would be
with others. Cloute, Mitchell, and Yates (2008) described the social stigma attached to a
label of disability and the difficulty in disclosing this to others.
McIntire et al. (2006) found the history of a mild TBI was negatively correlated
with the quality of attention. There was also found difficulty in ignoring distractions
(Willmott, Hocking, Ponsford, & Schonberger, 2009). Working memory was also found
to be negatively affected by Moran, Nippold, and Gillon (2006) and this affected the
ability to comprehend figurative language. Dennis, Wilkinson, Koski, & Humphreys
(1995) found that cognitive deficits found in a proportion of children post TBI persisted
over time and Taylor (2004) also found that learning was affected in childhood TBI.
Another aspect of learning, goal setting, was compromised in people with a history of
TBI along with goal achievement (Hart & Evans, 2006). Briel, McManus, and Getzel
(2007) found experiential learning worked best for students with disabilities.
Besides the intrapersonal issues that could affect the learning process,
interpersonal issues have also been identified in the literature. Families with a member
with an acquired brain injury have been found to have more distressed family system
function which endured over time (Gan, Campbell, Gemeinhardt, & McFadden, 2006).
Students with a history of TBI would also have to contend with the negative
misconceptions regarding TBI survivors that the public was found to hold including less
intellectual competence, ambition and kindness (Hux, Schram, & Goeken, 2006; Linden
& Crothers, 2006).
None of the previous research investigates the actual personal experiences of the
person with a traumatic brain injury upon entering college. Donnelly, Donnelly, and
Grohman (2005) did question adults with a history of TBI about the problems they
thought they were having related to their injury as part of their study. This was not a
phenomenological study, nor was it focused on the college experience. Pagulayan,
Temkin, Machamer, and Dikmen (2006) researched the quality of life for adolescents and
adults after experiencing a traumatic brain injury. The thoughts and feelings of adult
women regarding assistive technology to aid memory were researched by Dry,
Colantonio, Cameron, and Mihailidis (2006). The needs of adults who had experienced a
TBI were assessed by Rotondi, Sindule, Balzer, Harris, and Moldovan (2006) and
Klinger (2005) examined occupational adaptation after a TBI. There is presently ongoing
longitudinal research involving 90 students with a history of TBI who graduated from
high school in 1998 “tracking employment, post-secondary education, living situation,
health and well-being, life satisfaction, use of public services and other factors” (Todis,
Glang, Bullis, Andrews, & Hood, (in press), p. 3).
The most relevant research to this study would be an investigation performed by
Marschark et al. (2000) into the intellectual and emotional functioning in college students
following a history of a mild TBI and qualitative inquiry into the experiences of
university students coping with brain injury by Haag (2009). Marschark et al. recruited
students from psychology classes using a questionnaire to ascertain any TBI history.
They also recruited a group of students with a history of amnesia and a group with a
history of neither. These students were then subjected to tests that focused on cognitive
issues, study behaviors and emotional functioning. Their research concluded that
although there did not appear to be any significant difference between the groups
regarding cognition and study behaviors, there was a significant difference in personal
and emotional functioning. The students with a history of TBI appeared to have more
severe distress in these areas. This study used students’ self-disclosure of a TBI as the
tool to identify participants regardless of whether medical attention had been sought, and
found most of the subjects had PTA of less than one hour or a mild TBI. It also did not
gather any data about the learning experience for these college students. Haag gathered
data regarding coping with the university experience by students with a history of brain
injury, but did not focus on the experience of learning.
Overview of TBI
The time from the 1970s to the present is very telling in terms of the advances
made in the concept and treatment of TBI and the education of students with a history of
TBI. Ruff (2005) described the evolution of the “golden hour,” (p. 5) the first hour after
a TBI in which further damage could be minimized, as occurring during the late 1970s
and early 1980s in response to experience in the Vietnam War. During this time trauma
centers were developed with emergency transportation. The Glasgow Coma Scale was
being used by physicians to triage TBI patients. The Rehabilitation Act of 1973 included
Section 504, which mandated that students with disabilities could not be denied the
benefits of any program receiving Federal financial support (Sitlington, 2003).
The 1980s were also the time in which research began to be focused on
moderately to severely injured patients of head trauma. The literature began to reflect
this interest with the appearance of the Journal of Head Trauma Rehabilitation and the
journal Brain Injury. This focus on severe brain injury was missing the 80% of patients
with TBI that sustained mild injury. Towards the end of this decade, scientists were
finding that there was diffuse axonal injury even in patients with mild traumatic brain
injury (Ruff, 2005).
In the 1990s, managed care caused the severe curtailment of many rehabilitation
services for patients with TBI and their care increasingly fell to their families. During
this decade, litigation regarding TBI increased dramatically in response to the decreased
reimbursement for these services (Ruff, 2005). The Americans with Disabilities Act
(ADA) expanded the coverage of Section 504 to all programs and services regardless of
Federal funding in 1990 (Sitlington, 2003). 1990 also saw the emergence of the
Individuals with Disabilities Act (IDEA), which established TBI as a disability category
and mandated that these students were eligible for special education services (Gil, 2003;
Glang et al., 2004).
Only a fraction of people who experience a TBI will present to an Emergency
Department (ED), of which a smaller proportion will be hospitalized, and an even smaller
proportion will die from their injuries. Therefore, the total number of incidences of TBI
each year in the population is unknown; what data there are reflect those people who seek
medical attention and are reported. Both those groups who seek attention and those who
do not however are believed to include people who will experience long-term
consequences from the TBI, including a significant number of battered women (Comper
et al., 2005; Guerro, Thurman, & Sniezek, 2000; Jackson, Philip, Nuttall, & Diller, 2004).
Therefore, the data that are available regarding the incidence of TBI and its consequences
reflect the minimum number of cases found in the population.
In 1994, seven states compiled data regarding TBI-related hospitalizations and
deaths and reported these data to Congress. Collectively these states reported 32,112
cases of TBI. This reflects an incidence rate of 90.9 cases per 100,000 population.
Fifteen to twenty-four-year olds were found to have one of the highest incidence rates
(Traumatic brain injury in the United States: A report to Congress, 1994).
Lovasik, Kerr, and Alexander (2001) cited an incidence rate of 95 per 100,000
reflecting the 1.2 million to 1.74 million cases reported nationwide. This coincides with
the Center for Disease Control (CDC) data of at least 1.4 million cases (Traumatic brain
injury in the United States: Emergency department visits, hospitalizations, and death
(2006). It estimated that of this population up to 90,000 people sustain long-term damage.
(Lovasik, Kerr, & Alexander, 2001; Traumatic brain injury in the United States:
Emergency department visits, hospitalizations, and death. 2006). Bay et al. (2006) stated
an estimation of approximately “5.3 million Americans are living with a TBI-related
disability” (p. 142).
Langlois, Rutland-Brown, and Thomas (2005) reported the average annual
incidence of TBI in children ages 0-14 years was 475,000, which included deaths. Yeates
(2000) found the incidence of TBI in children under age fifteen to be 180 per 100,000.
The total incidence of TBI found in people 0 to 24 years of age reflects a significant
proportion of the total population of TBI, and this group developmentally is the most
likely to encounter the prospect of post secondary education.
The actual number of primary and secondary school students with a history of
TBI is most likely not reflected in the data received from schools. Reasons for this
discrepancy include the fact that some states use categories that do not include the term
TBI when classifying students; the criteria for special education services varies; many
students may have a special education classification prior to the TBI that is not changed
to reflect the TBI; some schools may provide accommodations for students with TBI but
not count them because they do not actually enter special education services; and finally,
some students will not be provided with needed services due to performance profiles that
suggest no need (Ylvisaker et al., 2001)
The damage to brain tissue that occurs in traumatic brain injury is a result of the
physics of brain tissue being exposed to an external force or energy and disruption at the
cellular level due to neurochemical mechanisms. The injury comes from three forces:
direct contact; acceleration and deceleration; and rotational acceleration and deceleration.
In direct contact the damage occurs when an object impacts the skull and causes bruising
and bleeding. The damage that occurs in acceleration and deceleration involves the brain
accelerating in one direction within the skull, striking the skull and decelerating, and then
rebounding to the other side of the skull where it strikes again and decelerates. The
injury on the opposite side of the brain from the original impact is called a contrecoup
injury. The damage that occurs with this force involves tearing of the brain tissue and
tearing of the blood vessels within the tissue. The final force that causes injury is a
rotational acceleration and deceleration. This torsion can again tear tissue and blood
vessels, but this force can also tear the intersection of the white and gray matter of the
brain (Lovasik et al., 2000; Yeates, 2000; Zink & McQuillan, 2005).
The initial physical damage is then exacerbated by the subsequent neurochemical
events. These neurochemical events can include the effects of the production of free
radicals and amino acids, the alteration of calcium homeostasis, and the effects of the
inflammatory process. It has been hypothesized that dying brain cells release oxygen free
radicals; these free radicals then destroy other brain cells. The initial brain trauma from
the physical damage also causes the release of the amino acids glutamate and aspartate.
These neurotransmitters are toxic to the undamaged brain cells and are hypothesized to
cause a disruption in the homeostasis of calcium within the cells. This calcium disruption
also causes further cellular damage and causes vasoconstriction, which continues the
damage through hypoxia. Finally, the inflammatory process consisting of the release of
cytokines causes an influx of inflammatory cells and the disruption of the blood brain
barrier (Lovasik et al., 2001; Yeates, 2000). This subsequent damage can continue from
weeks to months after the initial injury (Jorge & Robinson, 2003).
Frequently much of the direct damage in TBI occurs in the anterior aspect of the
brain (Turkstra et al., 2004). This presents a major problem as the frontal lobe is
involved in a variety of complex processes including: “reasoning, planning, parts of
speech, movement, emotions and problem solving” (Kinser, 2000, ¶ 3). Developmentally
the frontal lobe is actively growing and changing into the “third decade of life,” therefore
any insult that happens earlier can affect future development (Turkstra et al., 2004, p.
245). This sort of injury may also not become evident until at least adolescence because
before that stage in life, surrounding adults take care of the organization and planning
needed in the students life (McDonald et al., 2001). Right temporal lobe damage has been
associated with transcendental experiences and difficulties with social skills and selfawareness (Johnstone & Glass, 2008).
The Challenges of TBI
Students with a history of TBI can face many varied problems/challenges that
influence their ability to learn. These challenges have been categorized in various ways.
The CDC (2006) discussed these challenges in terms of cognitive, physical, and
behavioral issues. Ruoff (2001) described the challenges either cognitively,
physically/sensorally or psychosocially. The World Health Organization (2004)
describes the changes after TBI as either physical or cognitive. A model that attempts to
synthesize many of the other models will be presented in the following paragraphs.
Donnelly, Donelly, and Groham (2005) introduced the ‘Two-dimensional model
of TBI problems’. This model placed the emotional and cognitive domains on each end
of a y-axis, and the interpersonal and intrapersonal domains on each end of an x-axis.
The authors considered the intersection of these axes as representing independence
because the concept seemed so central to the issues involved in this model. This then
lead to four domains: Emotional/Interpersonal, Emotional/Intrapersonal,
Cognitive/Interpersonal and Cognitive/Intrapersonal.
What is missing from the model is the physical domain to represent the
physical changes and problems related to TBI. The physical domain would
surround the model because physical challenges affect all of the previously
mentioned domains.
The Emotional/Intrapersonal domain represents those challenges that are caused
largely by emotions and are felt in a personal way. The Emotional/Interpersonal domain
consists of those challenges that are again caused largely by emotions but manifest in
issues with other people. Those challenges that are caused largely by cognitive issues
and are felt personally are found in the Cognitive/Intrapersonal domain; and those
challenges that are largely cognitive but manifest as difficulty with other people are
found in the Cognitive/Interpersonal domain. Physical challenges associated with TBI
can affect all of the domains and cognitive and emotional challenges can affect the ability
to handle the physical challenges.
The Cognitive/Intrapersonal domain represents many challenges to survivors of
TBI. There are many challenges clustered around self-awareness: reduced awareness of
strengths and limitations (Donnelly, 2005; Ylvisaker et al., 2001; Ruoff, 2001); denial of
any disabilities; a lack of awareness of personal actions and a challenge in selfmonitoring (Donnelly, 2005). This challenge extended to the future in terms of impaired
expectations and inability to plan realistically and problem solve (Donnelly, 2005;
Ylvisaker et al., 2001). This is reflected in difficulty with prospective memory or
forgetting intentions planned to be performed in the future and was seen in damage to the
frontal lobe (McCauley & Levin, 2004). The concepts of implicit and explicit memory
are also reflected here. Survivors of TBI often exhibit impaired explicit memory but
intact implicit memory, which effects how they view themselves (Watt, Shores, &
Kinoshita, 1999; Zoltan, 2007).
Another related challenge found in survivors of TBI was difficulty in
understanding cause and effect, in learning from consequences and actually learning the
errors themselves (Ruoff, 2001; Ylvisaker et al., 2001). Many of the major challenges
found in this domain revolved around the concept of executive functioning. There was
difficulty in organizing thoughts and actions (Donnelly, 2005; Ylvisaker et al., 2001); a
decreased ability in categorizing and sequencing (Donnelly, 2005); a decreased ability to
hold several thoughts at once; difficulty in generalizing (Yslivaker et al., 2001); slowed
cognitive processes (Ruoff, 2001; Yslivaker et al., 2001); inefficient learning (Ylvisaker
et al., 2001; Williamson, Scott, & Adams, 1996); impaired comprehension; difficulty
with prioritizing (Ruoff, 2001); and general difficulty with executive functioning
(Chapman et al., 2004;, Brookshire et al., 2004; Jurado-Arroyos et al., 2006). Although
someone with a TBI may attend to tasks longer on the computer, executive functioning
difficulties can also negatively affect online learning for a student with TBI (Falconer,
2006). Crow (2008) suggested design techniques to make the online classroom easier to
navigate for students with disabilities.
Related to the difficulty with executive functioning, there was found difficulty
with memory (CDC, 2006; Hawley, 2003; Roncadin, Guger, Archibald, Barnes, &
Dennis, 2004; Ruoff, 2001; Ylvisaker et al., 2001). According to Ylvisaker, Szekeres,
and Hartwick (as cited in MacLennan & MacLennan, 2008) problems with short-term
memory proved to negatively affect test taking ability. There were also challenges with
attention and concentration (CDC, 2006; Hawley, 2003; Ruoff, 2001; Ylvisaker et al.,
2001; Willmott, Hocking, Ponsford, & Schonberger, 2009) and lack of self-control or
compulsions (Donnelly, 2005). Finally, temporal disorientation (CDC, 2006; Donnelly,
2005; Ruoff, 2001), spatial disorientation (Sohlberg, Todis, Fickas, Hung, & Lemoncello,
2005), weak intuition (Ylvisaker et al., 2001), low self-confidence (Donnelly, 2005), loss
of initiative (CDC, 2006; Donnelly et al., 2005; Ylvisaker et al., 2001), frustrations with
independence and secondary education (Ruoff, 2001); and difficulty in managing stress
(Ruoff, 2001) have been found.
It can be difficult to tease out those issues in the Cognitive/Interpersonal domain
because there is some overlap in how an issue is affecting someone personally, and how
an issue becomes an interpersonal challenge. However some challenges have been
recognized that appear to be more interpersonal and these seem to focus on
communication and behavior.
Communication challenges involving outspokenness, increased talkativeness and
general discourse problems have been found by Donnelly et al. (2005); Dennis and
Barnes (1990); Hammond, Hart, Bushnik, Corrigan, and Sasser (2004); and Tsaousides
and Gordon (2009). Interpersonal behavior issues included violence, immaturity,
impulsiveness, decreased inhibitions (Donnelly et al., 2005), and general social
inappropriateness (Ruoff, 2001). These may stem from impaired affect recognition
ability (Lew et al., 2005). Other challenges for survivors include inflexibility and being
easily startled, increased substance abuse (Donnelly et al., 2005), and a “decreased ability
to evaluate behaviors, intents, and feelings of others” (Turkstra et al., 2004, p. 254).
The domain of Emotional/Intrapersonal contains issues of an emotional nature
that affect the survivor more personally. The most prevalent challenge in this domain
was depression (CDC, 2006; Donnelly et al., 2005; Larson, Schmalfuss, Kaufman,
Kellison, & Perlstein, 2009; Ruoff, 2001; Underhill et al., 2003) but anxiety (CDC, 2006;
Donnelly et al., 2005; Larson et al., 2009; Riggio & Wong, 2009); anger (Donnelly et al.,
2005; Lucas & Addeo, 2006), irritability (CDC, 2006), and apathy (Donnelly et al., 2005)
have also been found. Trudel, Scherer, and Elias (2009) postulated that these feeling
might also be precipitated by the change in abilities due to the TBI. Survivors also
experienced loneliness and isolation, loss of self-esteem, embarrassment about
forgetfulness (Ruoff, 2001), and frustration with deficits (Donnelly et al., 2005). In terms
of expressiveness, an unusual affect, lack of emotion and decreased lability was seen
(Donnelly et al., 2005; Ruoff, 2001). Although Haag (2009) described some happy
experiences in university students with a history of brain injury, there was very little
research found in the literature regarding happiness in the TBI experience. Finally, the
survivors also had trouble in controlling emotions and mood fluctuations (CDC, 2006;
Donnelly et al., 2005; Hawley, 2003).
One of the more painful consequences of a TBI is the difficulty many survivors
experience in interpersonal relationships (Brown, Gordon, & Spielman, 2003). There
was a frequent loss of friends (Hawley, 2003; Ylvisaker et al., 2001), a breakdown in
relationships (Lew et al., 2005), a disconnect with peers (Ruoff, 2001), awkward
behavior (Ylvisaker et al., 2001), and social withdrawal (Donnelly et al., 2005; Lew et
al., 2005). These people demonstrated poor social skills with the opposite sex and great
difficulty in maintaining a relationship with a significant other (Donnelly et al., 2005).
Flaherty (2008) discussed the importance of relationships or social capital, particularly
for people with a history of brain injury.
Finally, the physical consequences of TBI that can affect all of the previous
domains include many manifestations. Some of the more common physical challenges
included fatigue (CDC, 2006; Hawley, 2003; Ruoff, 2001), visual/hearing impairments
(CDC, 2006; Musiek & Chermak, 2009; Ruoff, 2001), headache (CDC, 2006; Hawley,
2003), and seizures (CDC, 2006; Ruoff, 2001). The following were also found: apraxia,
chronic pain, speech impairments (Gironda et al., 2009; Ruoff, 2001), dizziness,
insomnia, uneven gait and nausea (CDC, 2006). These physical ailments certainly would
have a negative impact on coping with the other challenges a survivor faces.
As high school students with a history of TBI transition to college, they will find
changes regarding their legal rights. The Individuals with Disabilities Education Act
(IDEA) does not apply to postsecondary education. This means there will no longer be
an Individual Education Program (IEP), nor is the postsecondary school required to
identify the student as having a disability or assessing the disability. The legislation that
applies in postsecondary education is Section 504 of the Rehabilitation Act of 1973 and
Title II of the Americans with Disabilities Act of 1990 (Spellings & Monroe, 2007).
Although a free and appropriate education is no longer mandated in
postsecondary education, these schools must not discriminate on the basis of the
disability and are required to provide academic adjustments as needed to ensure this
discrimination does not occur. If the school provides housing to non-disabled students, it
must provide appropriate housing for the disabled student at the same cost. The college
student is responsible for identifying him/her self as having a disability if they want an
accommodation and will be required to provide proof of such disability. This proof may
vary from school to school and the school may do its own evaluation of the disability at
its own cost. The accommodations are to ensure an equal educational opportunity, not to
lower essential requirements and may vary greatly among colleges (Spellings & Monroe,
2007; Sitlington, 2003; Nordlund, 1994).
The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation
Act afford college students with disabilities protection from discrimination. To qualify
students must be able to show a record of impairment. College students with a history of
TBI would need to be able to show a record of impairment in learning to access
supportive learning services, and these services may vary from school to school. More
often than not the TBI student transitioning to college has not had the ideal preparation in
terms of appropriate services in high school and the preparation needed to be their own
advocate in college (Mann, 2006).
In a longitudinal study begun in 2000 involving secondary school students
receiving special education Cameto, Levine, and Wagner (2004) found that
approximately 40% of the students planned to attend either a 2- or 4-year college postgraduation. The ongoing research study Project PSO: Post-Secondary Outcomes found
that 30 percent of the graduating TBI students had enrolled in post-secondary education
or training programs (Glang et al., 2004). Three community colleges in Oregon held
Postsecondary Academies, one day seminars geared to students with disabilities, and of
the 433 students that attended, two identified themselves as having a TBI (Kato et al.,
2006). The post secondary education experience was postulated as being even more
beneficial for a TBI student due to the “mental stimulation and age appropriate
socialization activities” (Ruoff, 2001, p. 1). As difficult as this transition may be, the
rewards can be much more than increased knowledge.
Students with disabilities were more likely to enroll in community colleges than a
4-year college (Horn & Bobbitt, 1999). Community colleges have an open enrollment
policy in which any student will be accepted; however, “Research has shown that a
majority of students who enroll in the 2-year sector with the intentions of later
transferring to a 4-year institution do not transfer” (Horn & Bobbitt, 1999, p. 5). Murray,
Goldstein, Nourse, and Edgar (2000) also found a very low graduation rate from any post
secondary program among students with learning disabilities. They identified the three
major problems for students with learning disabilities as low rates of post secondary
education, lower rates of 4-year institution enrollment, and even lower rates of
Part of the problem was the academic preparation of the student with disabilities.
These students “were more likely to have taken remedial mathematics and English” high
school courses; they were also “less likely to have taken advanced placement courses,
had lower grade point averages, (GPAs) and had lower SAT entrance exam scores” (Horn
& Bobbitt, 1999, p. v). Sitlington (2003) reiterated that point and further identified lack
of learning strategies as a problem with academic preparation for post secondary
education. Students with disabilities were also found by Horn and Bobbitt (1999) to have
waited longer after high school graduation to attend post secondary education, to have
obtained an alternate form of the high school diploma and to have dependents. These
students were also found to aspire less towards post secondary education than nondisabled students and viewed themselves as having few learning strengths (Sitlington,
2003). The cognitive strengths of a TBI student should be evaluated to help identify areas
of long-term potential success. Savage (2005) recommended neuropsychological testing
and neuroimaging to help identify both areas of cognitive weaknesses and strengths.
Another issue found in students with disabilities in transitioning to post secondary
education was a lack of self-awareness regarding the disability, a lack of understanding in
how the disability affected their learning, and an inability to explain these concepts to
others (Patterson & Staton, 2009; Sitlington, 2003). Hitchings et al. (2005) described the
less successful students with disabilities as having the following characteristics: a lack of
understanding of the impact of their disability on their learning, an inability to identify
their own strengths and weaknesses, “difficulty advocating for themselves, low self31
esteem, and low self-efficacy” (p. 31). Haag (2009) and Driver (2005) also described
instances of negative self-descriptions and low self-esteem in students with TBI.
Conversely, they found that students with disabilities who were successful were “more
likely to be able to assess their personal strengths and weaknesses, accept their
disabilities, and engage actively in learning” (p. 31). Prigatano (2005) described a
moderate correlation between the severity of a TBI and the level of impaired selfawareness.
Sitlington (2003) discussed the nonacademic challenges in the transition to post
secondary education found by DuChossois and Michaels: “(a) problem solving, (b)
organizing, (c) prioritizing multiple-task completion, (d) studying, (e) self-monitoring, (f)
attacking and following through on tasks, (g) managing time, and (h) interacting socially
in a variety of new situations” (p. 109). Students with learning disabilities have been
postulated to have lower self-esteem from academic difficulties in high school and may
in fact be simply attending college to please parents rather than to fulfill their own
aspirations. Both of these could have a negative impact on the postsecondary experience
(Janiga & Costenbader, 2002). Finally, faculty and schools were found to be struggling
with accommodation (Briel et al., 2007; Kennedy, Krause & Turkstra, 2008).
Self-Awareness and Self-Direction
According to Malcolm Knowles in 1975 as cited by Guglielmina, Long, and
Hiemstra (2004) in its broadest meaning, “self-directed learning” describes a process in
which individuals take the initiative, with or without the help of others, in diagnosing
their learning needs; formulating learning goals; identifying human and material
resources for learning; choosing and implementing appropriate learning strategies; and
evaluating learning outcomes (p. 5). Knowles, Holton, and Swanson (2005) built upon
the developmental theories of Erickson, Bruner, and others in formulating his theory of
self-directed learning (SDL). They identified the increasing needs and capacities of
individuals as they mature to include self-direction, using their own experience in
learning, identifying their own readiness to learn and organizing their learning around
their own life experiences.
Knowles et al. saw as a problem the difference between the ages at which selfdirected learning would naturally occur, and when society believed self-directed learning
should occur. In other words, students became less and less developmentally dependent
on the instructor as they aged, reaching independence and self-direction at the end of
adolescence. Society however saw this age of self-direction and independence occurring
much later in adulthood. During this gap period, students were still being approached in
a pedagogical manner, rather than as an adult. This mismatch in teaching style versus
learning style resulted in “tension, resistance, resentment, and often rebellion in the
individual” (p. 62).
Knowles et al. (2005) defined mental models as described by Senge as deeply
held views of how the world works, these views “limit us to familiar ways of thinking
and acting” (p. 191). Self-directed learning was composed of thinking and acting, and if
a person’s view or mental model of how learning should occur did not fit with the
concept of self-directed learning there would be resistance. Direction according to
Knowles et al. (2005) involved the amount of assistance a learner needed in the learning
process. A learner with a high competence in the subject would need less direction and
would be more independent in the learning process. Knowles et al. (2005) described the
more potent motivator for learning in adults as internal satisfaction rather than external
Allen Tough also conducted research regarding SDL during this time and added
information regarding its prevalence and process. He described SDL as an actual form of
study (Merriam, 2001). Tough viewed self-directed learning as an individual activity
(Donaghy, 2005) although described it as a very social activity. He used the analogy of
an iceberg to refer to self-directed learning, with the entire iceberg representing all of a
person’s self-directed learning experiences, and the visible tip representing formal
education. Most people do not realize the extent of self-directed learning in which they
participate. He developed an interview process to help uncover the hidden self-directed
learning that has been used extensively in subsequent research. Tough described learners
as the center of the adult education universe that uses adult educators as a resource.
Self-directed learning does not take place in isolation, however if this is practiced,
those who want an interactive learning environment may meet resistance. Although selfdirected learning does require solitary for self-reflection, reading and writing, discourse
with others is also a large part of validating the construction of new meaning (Brockett,
Philip Candy proposed that a learner’s level of SDL was situational; it could not
be assumed that the ability to be self-directed would transfer across contexts. Selfdirected learning is seen as both a means to lifelong learning and a desired result of
lifelong learning (Candy, 1991). Assumptions that had been made regarding self-directed
learning included adults were naturally self-directing; the best way to learn self-directed
behavior was to act in a self-directed manner; and once self-directed learning had been
learned in one context, it is transferable to every context (Candy, 1991).
Self-direction as a goal also had two domains according to Candy (1991, personal
autonomy and self-management. Self-management was the ability of a person to manage
all the activities associated with learning, to control those to varying degrees. However,
this was all done within the constraints of the existing system without any critical thought
about the relevance of the system or context. Personal autonomy was described as this
critical reflection, the control of the larger picture of one’s destiny. “…the decision to
support self-directed direction is at least partly an ideological decision, based on a
particular value system…” (p. 50).
Candy (1991) listed the benefits of self-directed learning as: it encourages
flexibility in the face of a changing world; it recognizes the way adults learn; “it reflects
the primacy of learning over teaching; it accommodates individual differences in
learning” (p. 50); it increases motivation; it develops democratic skills; it encourages
curiosity; and “it encourages the development of self-determining individuals” (p. 51).
“Self-awareness refers to the capacity to become the object of one’s own
attention” (Morin, 2006, p. 359). A person can be conscious of what is external to them,
the environment, or what is internal, self-awareness. Schooler (2002) further clarified
that it was possible to be conscious, but not self-aware. An example of this would be
realizing one did not have any memory of what had just been read. Schooler developed a
model of consciousness that identified non-consciousness, consciousness and metaconsciousness, with meta-consciousness including self-awareness. Self-awareness,
however, as a concept, was seen as larger than the concept of meta-consciousness as it
also included other aspects of the self such as self-esteem. Schooler defined “’nonconsciousness’ as an absence of consciousness, ‘consciousness’ as experiencing
sensations, perceptions, emotions, thoughts, etc., and ‘meta-consciousness’ as…an
awareness of one’s own conscious experiences” (Morin, 2006, p. 360).
Grieve (2004) found in her research for the Ontario Literacy Coalition that “selfdirection is critical to the learning process” (p. 5). She described self-awareness and
awareness of others as fundamental aspects of self-direction. She also found that selfdirection and self-management were used interchangeably in the literature and by
practitioners in the field. Self-direction and self-management are also seen as a “set of
skills, attitudes and behaviours” and something that is needed for lifelong learning (p.
10). Learning was seen as a social activity that required the “building of awareness of
our own perceptions: how they are shaped by others and by our experience” (p. 22).
“Underlying the ability to manage the self is self-awareness, a sense of identity and a
sense of possibilities” (p. 26).
“Phenomenology is a scientific study of the appearance of things, of phenomena
just as we see them and as they appear to us in consciousness” (Moustakas, 1994, p. 49).
This seemingly simple approach to describing something, a phenomenon, is actually a
rigorous, complex qualitative research approach that allows the essence of a phenomenon
to emerge. The research question asked in this study, “How do college students with a
history of traumatic brain injury perceive and describe their learning experience?” was
best answered by this approach. The word “how” implied an openness on the part of the
researcher to whatever this experience was for the co-researcher; the words “perceive”
and “describe”, acknowledged that the co-researchers had unique viewpoints and
consciousness of this phenomenon and shared this phenomenon with the researcher in
their own unique way.
Research Traditions and Structures
Description is at the heart of all research (Gall, Gall, & Borg, 2003). Some
research designs may do more than describe; however, all research will at least describe.
The best research design will help the researcher focus on what is most important to
describe (Anderson, 1998). This may be a large picture or a more focused view.
Descriptive research can use numbers, words, or both to describe. Therefore, descriptive
research has been found in quantitative, qualitative and mixed research designs.
Burkett (1990) described a larger view of the definition of descriptive research
when classifying research designs. Burkett suggested that most research could be
classified according to three dimensions: the objective of the study, the time period of the
study, and the researcher’s role. The objective of the study was further classified as
exploratory, descriptive or analytical. The descriptive dimension was described as
research that characterized variables within a population. Burkett developed this
classification specifically for quantitative research, but saw the applicability to most
qualitative research. With this definition several research designs, both quantitative and
qualitative could be considered as descriptive research including causal/comparative,
correlational, survey, exploratory, evaluation, case study, phenomenological,
ethnography, biography and historical. Some of these are combined in mixed research
According to Creswell (1998) qualitative research is composed of the following
characteristics: it is conducted in a natural setting; the researcher is the main instrument
for data collection; data are collected by visual and/or audible observation; data are
analyzed inductively; the outcome is the process itself; the participant’s perspectives are
important in the analysis and the results of the study are expressed in a detailed,
persuasive language. The qualitative researcher has the ontological view of
constructivism; that there are many realities in the world depending on the context and
the time in which the research is conducted (Mertens, 2005). A qualitative researcher
needs to discuss personal beliefs and biases since the analysis of the data is interpretive
(Creswell, 2002). The data collection process is interactive with the participants and there
are multitudes of data collection techniques (Creswell, 2003).
“Qualitative research seeks to capture and reveal the multiple, ambiguous,
slippery meanings and images within out social world” (Finlay, 2003, p. 118). Although
not all qualitative research styles include this, capturing these images requires
hermeneutic reflection. Phenomenology includes a heuristic style, one in which the
researcher reflects not only on the phenomenon, but also upon himself as part of the
research. This connection with the phenomenon leads to even greater and deeper
description of the phenomenon (Dahlberg & Halling, 2001).
Phenomenological Inquiry
Phenomenology is not a “uniform philosophic discipline” (Walters, 1995, p. 791).
There is a great amount of diversity in thought regarding phenomenology and there is not
a single method. Spiegelberg (1984) referred to phenomenology as a movement because
of its “dynamic momentum”, its consisting of several different but parallel streams of
thought, and the fact that these separate streams have a common origin but may have
different destinations (p. 1). He described followers of this as practicing “direct intuition
as the source and final test of all knowledge, to be formulated as faithfully as possible in
verbal descriptions” and believing that “insight into essential structures” is not only a
possibility but also “a need of philosophical knowledge” (p. 5).
The nature of a phenomenological study is dependent on which ‘stream’ is being
followed. If following a Husserl version of phenomenology, one sees the phenomenon as
an object separate from oneself or subject, and the researcher attempts to identify and put
aside all preconceived thoughts and beliefs about the phenomenon in an attempt to truly
separate and see this object for what it is. If the researcher follows a Heidegger version
of phenomenology, then the phenomenon is seen as situated within a context, just as the
researcher is situated within a context. Through attempting to understand one’s own
context as the context of the phenomenon being explored, the researcher reflects on and
comes to new understandings about himself or herself as well as the phenomenon
(Spiegelberg, 1984; Walters, 1995).
Heidegger “refers to human existence as Dasein, or being-there, which
emphasizes the situatedness of human reality” (Walters, 1995, ¶ 125). He described the
human as having a tendency to want to escape from being authentic, and instead
conforms to society, and becomes inauthentic. “‘One’ wants to keep close to the
average…Human existence is first and foremost that of ‘one’, not of ‘self’” (Spiegelberg,
1984, p. 389). “Merleau-Ponty declares: ‘Truth does not dwell only in the inner man, or
rather, there is no such thing as an inner man: man is within the world; it is in the world
that he recognizes himself.’” (p. 551). The phenomenology of Heidegger is essentially
concerned with ontology, what it means to be a person imbedded in the world (Walters,
1995). Phenomenology recognizes that existence itself is subjective; regardless of
whether or not there is a finite truth, what really matters is one’s perception of everything
in existence.
By trying to identify the general essences of consciousness Husserl was assuming
that there were pre-existing universal essences to discover (Speigelberg, 1984).
Knowledge is achieved when one looks externally and observes and correctly represents
what is independent (objective) from oneself (subjective) (Walters, 1995). The
phenomenology of Husserl was primarily concerned with epistemology, the knowledge
of the objective or the intentionality. Moran (2002) described Gadamer’s proposal of the
mutual understanding that occurs between two people when our understanding of our
present and past, or our horizon, becomes meshed with another persons and we both
develop new horizons. This is the social environment in which we learn. Research in
and of itself is a learning process for the researcher, and the phenomenological
framework allows the researcher to connect the others involved in the research, or coresearchers, in just such a way.
A pioneer of phenomenology was Franz Brentano. Specific elements in his
philosophy, such as using an intuitive method for gaining insight into essential elements
of phenomena influenced the work of future phenomenologist such as Edmund Husserl.
Husserl and Carl Stumpf were both students of Brentano’s. Stumpf greatly expanded on
Brentano’s work and developed “the importance of a systematic study of this area of
neutral phenomena as being the matrix of all the sciences” (Spiegelberg, 1984, p. 60).
Edmund Husserl is considered the “central figure in the development of the
Phenomenology Movement” (Spiegelberg, 1984, p. 69). Husserl was fascinated with the
idea that there were beings in this world that were aware of their own being and of others.
This wonder lead his life work to the “descriptive analysis of various types of thinking, of
various forms and degrees of intuitive consciousness, and of modes of symbolic and
direct representation” (p. 93). His philosophy was looking for ideas, pure essences of
experiences and their relationships, that may not be reflected in actual experience. These
essences were uncovered through a process called eidetic reduction. Husserl envisioned
the world as consisting of “detached subjects existing in a world of objects” (Walters,
1995, ¶ 20). This phenomenology became known as transcendental phenomenology.
Martin Heidegger strove to find the hidden meaning in phenomena. He believed
humans have a meaning that can be interpreted; this was a hermeneutic interpretation.
This hermeneutical technique could be used to bring “out the normally hidden purposes
of such goal-determined beings as man” (Spiegelberg, 1984, p. 385). Phenomenology
was to Heidegger an analysis and translation of our existence into the language of
ontology while keeping their essence true (Walters, 1995). Heidegger saw man as
interconnected to the world in which he was situated. One could not understand another
person without considering the world in which he lived (Walters, 1995). Heidegger also
did not believe it was possible to bracket one’s beliefs and values; instead the
researchers’ beliefs are an important part of the research. Ultimately Heidegger saw
phenomenology as reflecting the knowledge that was embedded in the everyday world.
Maurice Merleau-Ponty refined the concept of eidetic reduction. Rather than
essences, Merleau-Ponty saw this reduction as one in which the world stands “out against
the background of essences” (Spiegelberg, 1984, p. 552). He took the concept of
phenomenology far beyond Husserl’s work. He also agreed with Heidegger in that he
also could not see being able to separate oneself from the world. To Merleau-Ponty, “the
world is nothing but the field of our experiences, and we are nothing but a certain
perspective of it” (p. 565).
Hans-Georg Gadamer was a pivotal force in the development of present day
hermeneutics. The connection between this school of thought and phenomenology
becomes clear when one extends the concept of hermeneutics, which was to understand a
text in the context from which it arose, to understanding anything as being contextual
(Malpas, 2005).
Heuristic Hermeneutic Research
Moustakas (1990) described heuristic research as a process in which the
researcher develops progressively deeper understanding of the phenomenon by
developing a deeper understanding of oneself. This growing self-awareness is a way of
knowing, of being informed about the phenomenon. The researcher must begin the
research process with self-reflection, to come to know his thoughts and feelings about the
phenomenon. He then enters into an honest dialogue with co-researchers, and in this
way, a true dialogue about the phenomenon can occur.
“The classical discipline concerned with the art of understanding texts is
hermeneutics” (Gadamer, 2004, p. 157). Gadamer described the realization that not only
text but “everything that is no longer immediately situated in a world” (p. 157) needs to
be understood in its original meaning, and yet it is impossible to reconstruct that world.
What we learn from a hermeneutical stance is that the phenomenon we want to look at is
imbedded in its own present world, just as we are embedded in our own worlds (Finlay,
2003). Finlay described the hermeneutic circle as consisting of: “(1) fore-understanding,
(2) meeting a ‘resistance’ when interrogating experience and (3) an interpretive revision
of the fore-understanding” (p. 108). The researcher must become aware of the lifeworld
he inhabits, his own pre-suppositions and beliefs, in order to start to see the lifeworld of
the co-researcher. This helps to make possible the hermeneutical translation of
Photo Elicitation
Photo elicitation refers to the process of using photographs in an interview to help
elicit deeper responses from the co-researchers. Harper (2002) described how the use of
photos appeals to an area of the brain not utilized with words alone, and so a more
emotional, deeper meaning could be shared. Photo elicitation has been found in the
disciplines of psychology, sociology, education, anthropology and organizational studies
although to varying degrees. Harper (2000) described how photographs can “produce
data that enlarge our understanding of sociological processes” (p. 272). It can add to the
data obtained in the interview (Karlsson, 2001).
Photos have also been found to more equalize the power structure in the interview
process. The co-researchers used the photos as a third focus. By allowing the coresearcher’s to take the photos that were brought to the interview, the researcher also
empowered them to take a lead in the discussion. The interview process became a more
shared, two-way discussion. Harper found the interview process became longer, but less
tiring for the co-researchers (2002). Using photos to elicit discussions is also something
most people are very familiar with, such as sharing photos of a vacation, and helps to
make the interview process more familiar (Karlsson, 2001).
Having used photos in the interview as more than a simple representation of
something, the researcher explored with the photographer/co-researcher why that photo
was taken. What did that photo mean to them? What did the co-researcher like, or
dislike about that photo? This type of questioning lead to a deeper understanding of the
phenomenon being photographed (Karlsson, 2001).
Description of Methodology
Although many styles of research, both quantitative and qualitative describe,
phenomenology focuses on a description of the essences or essential concepts in human
consciousness (Osborne, 1994). Rather than focusing on prediction, measurement and
control, phenomenology focuses on discovery, description and meaning.
“Phenomenological methods attempt to explore conscious experience directly through a
specialized form of introspection rather than inferentially through overt observation, as
does cognitive science” (p. 168). This phenomenological study gave personal meaning to
the phenomenon of learning in college for students with a history of TBI.
Selection of Subjects
Fletcher et al. (1995) described the population of children that have suffered some
form of TBI as 180-200 out of every 100,000. The CDC defined the criteria for a mild
TBI as consisting of at least one of the following: confusion or disorientation, loss of
consciousness up to 30 minutes, neurological or neuropsychological problems and a score
of 13 or higher on the Glasgow Coma Scale (CDC, 2006). For this study the coresearchers self-identified as having had a history of TBI that included at least a loss of
consciousness and some confusion afterwards. A large urban community college and
University were initially targeted for volunteers. The departments of student disabilities
were given the research volunteer information to disseminate, and fliers were placed in
student gathering areas with contact information for the researcher. The sample size was
limited to six to eight students due to the amount of data anticipated. “Approximately six
participants are needed to understand the essence of an experience” (Waltz, Strickland, &
Lenz, 2005, p. 222). The smaller sample size was also used to allow for a greater depth of
knowledge regarding the question (Patton, 2002). If there were more volunteers than 8
the sampling decision would be based on a phenomenal variation with a preference given
to students in their first year of college. There would also be a preference given to trying
to obtain as homogenous a group as possible in terms of age, length of time since the
TBI, and severity of the injury to reflect the experience of that particular group (Patton,
2002). Each co-researcher signed a consent form for participation in a human subject
study. Some of these students may not have disclosed to others their history of TBI, so
the interview process and data gathered was treated with the utmost of sensitivity and
respect including using pseudonyms in the data reporting.
Data Gathering
Once co-researchers were identified the researcher met with each of them to
explain the nature of the research process and provide a disposable camera with which
they could take pictures of what seemed to demonstrate the learning process they were
experiencing. Students were then asked what questions they had. Once all questions
were answered they again indicated a willingness to volunteer and were asked to sign a
consent form and were given a written copy of the information they were initially given
In an attempt to deepen the data result and to provide triangulation three types of
data were collected. First, the co-researchers were given a disposable camera to be used
to take pictures of what seemed to demonstrate the learning experience for them.
Secondly, a notebook was provided along with questions for the co-researchers to use for
journaling, this happened in written form, electronically and verbally, however the
students preferred (Appendix A). The researcher collected both the camera and the
journal when the students completed using them. At this time the film was developed
and the journals were reviewed in preparation for the final data collection, the interview.
The co-researchers individually met with the researcher for an interview and the photos
and journaling were used to help guide interview questions and gain insights into the
experiences. The interviews were conducted at convenient locations, and provided
privacy as needed. The interviews were also be taped with permission from the coresearchers. At this time the researcher again reviewed the interview process,
confidentiality and how the data would be used.
Data Analysis
The following steps, based on Moustakas’ (1990) design in heuristic research,
were followed in the data analysis of this research:
1. The researcher journaled regarding preconceptions, assumptions and
experiences as a parent of a child learning with a TBI.
2. The researcher then transcribed the tapes and checked for accuracy. The
transcriptions were sent to the co-researchers for validation.
3. The researcher then read the transcriptions and listened to the tapes with no
formal interpretation attempted. Over the next 4-6 weeks the researcher
frequently, informally reflected on the information.
4. After the period of informal reflection the researcher began a focused, intense
period of interpretation. The first audiotape was listened to while the
researcher used paper to record ideas and draw concepts. The aim was to start
to identify general themes related to learning.
5. The written transcript for this audiotape was read in the same way with the
researcher recording thoughts and drawing on the transcripts themselves.
Again, the aim was to start to identify themes. Both the audio and written
transcript were used in order to view the data from different views.
6. Finally the journal and pictures that accompanied this audiotape and transcript
were reviewed with the same open attitude of simply trying to start to identify
7. The researcher then wrote summaries of these themes.
8. The first audiotape was re-listened to with no note taking, simply listening.
9. An initial overall meaning or meanings was then described in written form.
10. This entire process was repeated for each of the subsequent co-researcher’s
audiotapes, transcripts, journals and photos with the beginning identification
of common themes. These emerging themes were then sent to each respective
co-researcher for validation.
11. This first round of interpretation was finished with self-reflexive journaling
regarding the researcher’s experience. This self-reflection included a review
of the initial preconceptions, assumptions and experiences and any impact on
the research so far that may have been identified. The researcher then focused
on personal strong emotional feelings that occurred and reflected on what may
have been causing these responses and what those meant to the research.
12. The next several weeks consisted of continued reflection, journaling, and
reviewing all the data as needed to clarify ideas, and continued writing and
rewriting of the interpretation of the data. This was the hermeneutic circle of
reflection, identification of horizons and returning to the whole picture. The
researcher attempted to remain open to all possible themes by identifying data
that both supported identified themes, but also exploring data that don’t seem
to reflect a theme (Whitehead, 2004).
Ethical Considerations
Christians (2005) described three principles that have been developed regarding
moral standards for research involving human subjects: “respect for persons, beneficence,
and justice” (p. 146). Capella University’s Institutional Review Board (IRB) has been
charged with reviewing and monitoring research involving human subjects. This research
has met all conditions required by this IRB. In addition this research has been approved
by either the schools, or their IRB’s if they used one, at all of the research sites.
Respect for persons dictates that “subjects enter the research voluntarily and with
adequate information about the experiment’s procedures and possible consequences”, or
informed consent (Christians, 2005, p. 146). The co-researchers volunteered for the
research and were given a description of what the research would involve. They were
also given the opportunity to have any questions answered before agreeing to participate
and knew they could withdraw from the research at any time. They were also informed
there would be no compensation for volunteering for the research. The informed consent
form used was based on Capella University’s guidelines. The co-researchers were given
the opportunity to review the results of the research and request any changes to the
summaries of their interviews.
The principle of beneficence dictates that researchers “secure the well-being of
their subjects” (Christians, 2005, p. 146). Research actions are to ideally avoid harm
entirely, or at the least minimize “as much harm as possible” (p. 146). The coresearchers in this study had the opportunity to share personal information that had a
minimal risk of being embarrassing if it became public. Therefore, measures were taken
to reduce that risk. The co-researchers were assigned pseudonyms and no identifying
information was kept with the research data. All data was either kept in a locked box, or a
computer with locked access. The data will be kept for seven years and then destroyed.
Only the researcher had access to the data. The co-researchers often seemed to benefit
from having the opportunity to share their stories during the interview. The information
obtained during this research will hopefully benefit others with similar situations.
“The principle of justice insists on fair distribution of both the benefits and
burdens of research” (Christians, 2005, p. 146). This research involved a population that
could benefit from more research attention.
The purpose of this study was to give voice to students living the experience of
learning in college with a history of traumatic brain injury. The goal of this research was
to allow the essence of this experience to emerge using open-ended questioning in
interviews and the words of the students themselves (Creswell, 1998). The data described
in this chapter will address the central research question “What is the learning experience
like for college students with a history of traumatic brain injury?” The data will also
address a secondary research question “What are the factors that affect their learning
experiences, both positively and negatively?”
The researcher initially contacted the department of student disabilities of both a
large urban community college and public university with information regarding the
study. Representatives for these departments disseminated information to students they
thought might be interested. The researcher also posted fliers regarding the information
in student gathering areas on both campuses. Eventually the search was expanded to
include two more urban community colleges and a private university. Thirteen students
ultimately volunteered to be part of the research. Three did not meet the qualifications
because they were Master’s students. Two did not meet the qualifications because their
brain injury was not induced traumatically. Two dropped out after enrolling in the study,
one of which also dropped out of college. This left six students who self-identified as
having a history of a traumatic brain injury that included a loss of consciousness and
some confusion afterwards. Four of the students were male; two were female.
Research Design and Data Management
This qualitative research study used phenomenological inquiry based on three
different techniques to gather data: a questionnaire and journaling, an interview using
open-ended questions, and photographs taken by the co-researchers. These techniques
encouraged the co-researchers to openly share, in an in depth way, their lived experiences
and having three forms of data helped in the triangulation. The co-researchers met with
the researcher initially and after having questions answered regarding the research and
signing consent forms, they were given the questionnaire, a blank journal and a
disposable camera. The journal and photos would be used to help guide the interview
questions and gain insights into the experiences. They then contacted the researcher when
they were ready to return the journal and camera and schedule the interview. One
participant refused to use the camera, expressing concern that it would take too much
All interviews were audio taped and held in either the co-researchers’ homes or
public locations of their choosing. The interviews began with a discussion of the answers
to the questions from the questionnaire. This always involved hearing the co-researchers’
stories about their injury and, in many cases, the researcher was asked to share her
experience with traumatic brain injury. This conversation seemed to facilitate the coresearchers feeling comfortable with sharing their stories, which ultimately is the purpose
of phenomenological research. At some point in the interview, pictures were reviewed
with the researcher asking the open-ended question “How do these pictures reflect your
learning experience?” The co-researchers all seemed very excited to have someone listen
to their experiences.
The researcher took several steps to reduce her personal biases and prejudices
regarding this phenomenon. This reduction is called bracketing (Moustakas, 1994) or
phenomenological reduction (Walters, 1995). She journaled before the research began
about her thoughts and feelings about this experience. This researcher is the mother of a
college-age son who has the history of a traumatic brain injury. She also began a form of
self-awareness therapy involving weekly group work with a certified trainer in Nonviolent Communication. She became aware of her sadness regarding this phenomenon
and was able to watch it dissipate and see more clearly both the individual experiences of
her co-researchers and the larger picture of the phenomenon that was emerging. This
deeper understanding of the phenomenon developed by a deeper self-awareness is
heuristic research as described by Moustakas (1990). The researcher found this work on
self-awareness very helpful during the interviews in being able to practice keeping the
focus of her thoughts not on her own reactions, but on what the co-researchers were
trying to tell her.
The heuristic hermeneutic phenomenological methodology of Moustakas (1990)
was followed in both data collection and analysis. The interviews were audio taped and
the researcher transcribed the recordings using computer software designed for this
purpose. These recordings were listened to several times for clarity and to provide as
much accuracy as possible in the transcript. The written journals and pictures were also
viewed several times along with the transcripts as the phenomena became clearer both for
each participant and across co-researchers. The completed transcripts were then either
mailed to, hand delivered, or emailed to the appropriate participant according to their
wishes for review and further clarification if needed. No changes were suggested for any
of the transcripts.
As part of the research design, a summary of each participant’s transcript, journal
and photos was completed with identification of emerging themes. This summary was
emailed to all co-researchers and there was general consensus that the summaries were
accurate, with one participant requesting a few changes.
After all the interviews were transcribed, the transcriptions were analyzed along
with the journals for significant statements relevant to each theme. Creswell (1998)
described the data analysis process of phenomenology as involving identification of
significant statements from the data that signify the essence or themes of the phenomenon
being studied. Since the photographs had been discussed in the interviews, there were
significant statements regarding them found in the transcriptions. These statements were
then categorized according to emerging relevant themes. Each participant’s significant
statements were color coded and placed on computer software that gave the researcher
the ability to visualize each theme with significant statements from each participant. In
this way, the researcher was able to further reflect both on each participant’s individual
experience and on the emerging phenomenon itself.
Many of the themes identified were common to most, if not all, of the coresearchers. These major themes included testing, ways to learn, communication,
thinking, processing speed, emotions, socialization, disclosure, barriers, good teacher,
online learning, accommodations, self-esteem, self-awareness, memory, writing, time
studying, reading, fatigue, new skills, pain, sleep and computers. Some themes were
found to be more specific to just a few or one of the co-researchers. These minor themes
included initiation, support, directional impairment, distraction, transportation, school
load, spirituality, and domestic violence.
Data Presentation and Analysis
A basic description of each of the co-researchers and a description of their
photographs will be presented. Next, major themes identified from the co-researchers’
significant statements that evolved into the composite picture of the phenomenon of this
research will be presented. Direct quotes from the co-researchers will be used to convey
the essence of this lived experience. Finally, the minor themes will be presented. The
names used in the following descriptions are pseudonyms.
Alexander is a public university student who experienced his head injury, 20
years ago as a teenager, in a car accident. He also suffered a back injury in the accident.
He was in a coma for 20 days. He has been diagnosed with depression since the accident.
He was in good health before the accident. The university he attends has an enrollment
of about 24,000 students.
Emma is both a community college and a private university student who
experienced her head injury as an adult, seven years ago, in car accident. She had a brief
loss of consciousness and memory loss. She has now been also diagnosed with
depression. She was in good health before the injury. Her community college has about
35,000 students and her university has about 1,800 students.
Ethan is a community college student who experienced his head injury, 25 years
ago as a teenager, in a motorcycle accident. He was in a coma for 21 days. A few years
later he received a second head injury and an ongoing leg injury when as a pedestrian he
was hit by a car. Before his initial injury he was in good health. His community college
has about 8,500 students.
Jacob is a community college student who experienced his head injury as a first
year college student, in a long board accident, four years ago. Presently, he is still using a
wheel chair for most of his ambulation. He was in good health before the injury. His
community college has about 24,000 students.
Logan is a community college student who experienced his head injury in a car
accident as a teenager several years ago. He was in a coma for 17 days. He has recently
developed a seizure disorder secondary to the injury. He was in good health before the
injury. His community college has an enrollment of about 35,000 students.
Olivia is a community college student who experienced her head injury from
repeated physical abuse as a young child and again as a young teenager. The most severe
episode was 12 years ago. She has also been diagnosed with Cerebral Palsy, dyslexia,
auditory processing disorder, and Asperger’s Disorder. Her community college has an
enrollment of about 24,000 students.
Four of the co-researchers took photographs as part of the research. Logan was
already taking photographs and offered those instead of using the camera provided for the
research. Ethan voiced concern that the photograph process would take to much time and
opted not to take them.
Interaction. Many of Alexander’s photographs are of him interacting with other
people, either for school or for recreation. Alexander’s major requires him to interact
with other people, and he enjoys this and believes his ability to interact with others is a
strong personal skill he has. These photographs inspired discussion about Alexander’s
interactions with other people in many circumstances.
Learning. Alexander also had many pictures of places he studied. They included
the library, the outside spaces around the campus, and local coffee shops. These pictures
inspired questions about his studying habits and how he preferred to learn.
Transportation. Alexander took a few pictures of his bike. He often bikes to
school and these pictures lead to questions about how he got to school, his energy level
and issues related to pain. He is also part of a larger biking community and his part in
that community was discussed.
Participation. There was also a picture of a large project Alexander worked on
that is now part of the campus. This picture led to a discussion of his sadness and guilt at
not being able to participate at the level he believes his fellow students expected.
Support. Alexander took a picture of someone he has found to be very supportive
of his education. This picture led to a discussion about what supports he has.
Transportation. Emma took several photographs of her car and herself in her car.
These photos were related to how she got to school and the difficulty involved in that.
She also used these photos to display a domestic violence magnetic ribbon that was on
her car, which led to a conversation about her experience with domestic violence.
Learning. Emma took several pictures of one of her classrooms and the vending
machine outside the classroom. These pictures were used to discuss her learning
experience in the classroom, and her use of snacks during the class.
Support. Emma also took pictures of a place she used to work where a co-worker
was supportive of her education. She still occasionally sees this co-worker. These
pictures stimulated the discussion on what supports she had for her education.
Resources. Jacob took several pictures of his counselor in the disability resource
center. These pictures led to a discussion of the resources he had found to help his
Physical activity. Jacob took several pictures of his mat table and had one taken of
him while working out in therapy. Regaining his ambulatory ability is very important to
him and takes much of his time. These pictures led to a discussion about his physical
ability and how it impacted his learning.
Access and expression. Jacob took many pictures of the school grounds, some to
illustrate problems he had with access, and some to capture the beauty he saw. Jacob has
had a class on photography and was very focused on setting the pictures up correctly.
This lead to discussions on access, the classroom, how he traveled the campus, and career
plans for the future.
Relaxation and studying. Logan was already taking many pictures of squirrels in
his backyard and wanted to share those instead of using the research camera. Logan
spends a lot of time in his backyard studying and finds it to be a relaxing environment.
These pictures led to a conversation about what kind of environment was the best for his
learning and the importance of relaxation breaks in his studying.
Computer and desk. Olivia took a few pictures of her computer and her desk.
This led to a discussion of how important her computer was to her in learning and
connecting with the world. She also discussed how her cluttered desk was like Einstein’s
desk and her similarities with Einstein.
Comfort. Olivia took two pictures of her stuffed animals; this led to a discussion
of her frustrations with learning and how she used the stuffed animals for comfort.
Cafeteria. She also took two pictures of the school cafeteria. She usually uses the
cafeteria for breaks, quiet time and meeting with friends; this led to a discussion of the
importance of quiet in studying and her problems with memory.
Major Themes
All six of the co-researchers discuss the change resulting from the TBI. All of the
co-researchers can remember what learning was like before the injury. The change is a
major, life-changing event.
Testing was a theme common to the co-researchers, specifically problems with
testing. Alexander would much rather be able to demonstrate his learning in some other
form besides traditional testing. He has taken a test in a quiet room provided by the
Disability Resource Center and given one and one half the time given to other students as
an accommodation. Ethan takes tests privately on a regular basis, “I’ve got that luxury of
being able to take the test privately…they give me that leeway, I do so much better when
that happens.”
Logan believes his GPA is lower specifically due to how badly he does on tests.
“I do horribly on tests unless I’ve spent repeated hours studying.” If the test is not at the
beginning of the class, “you walk in out of the library or something after reviewing for
half an hour and it’s all fresh on your mind and you’re pretty much saying the processes
over and over in your head and they’re interrupted by the time you’re taking the test.” He
has also found private test taking helpful. “I’ve found it’s a little better to be put in a
private room like their office or something so my thought processes aren’t being
interrupted in anyway.” Jacob admits testing does not go well for him, and he does not
really understand why. He has to review material repeatedly for the test and “hopefully I
remember to do that.” He struggles with remembering things with tests and is “pretty sure
it would help” if he could use notes. Olivia has always had problems with testing and
finds she can answer questions more easily writing on a chalkboard rather than paper.
Ways to Learn
None of the co-researchers believed they learned best in the traditional lecture
classroom. Olivia likes using pictures and doing hands on projects, “I get bored
easily…but if they have mixtures, you know like activities and just a little bit of lecture,
hands on, and have the students do something related to the subject” she learns more. She
also learns better when she has a quiet environment, a slower pace, and “someone who is
an expert at special needs people, has patience, teaches in a very unconditional way.”
Alexander also finds he “learns most easily those things which make sense, on a practical
level.” He finds
the kind of work that I’m more suited to do, not often academic work, not often
traditional academic work, but a lot of my projects, the projects in my program
have to do with just dialogue between two people and getting messages across
and talking together and brainstorming, that kind of stuff I love…it’s just not
reading a book.
Alexander also found that just sitting next to someone who was actively studying was
conducive to his own learning, as though his or her energy flowed to him.
Logan also learns best
in interactive groups, or by focused instruction from any sort of teacher…one-onone with a teacher or other student engraves the information more…I’ve found
when I work with people or just turn to someone next to me and go like ‘hey, can
you explain this?’…it’s made a difference.
He finds having a connection with the instructor to be very helpful in his learning,
It’s a lot of me wanting to listen to them and learn what they’re teaching, and
them being able to convey that information best to me, so we have to have a
connection…them understanding me and me understanding them.
He has also found using a note taker frees him to listen to the instructor with his
full attention. Logan has also developed the strategy of developing a learning plan with
the instructor. He wants to know “am I going to need a notebook or am I going to need a
backpack or is this a class you just bring a pencil to?” He also develops a study plan,
I’m going to study when I go to work or commit a certain amount of time, a
schedule and what ways I’ll study or handle the class like…will I totally commit
to this book or read through this book and understand it? Or is this the class where
I need to venture all over the Internet and find the right way to learn this
information most modernly?
He also finds diagrams helpful, “diagrams help you understand, help me
understand, I mean, it’s like I see it as enclosed information that I need to know and it’s
separate from the other blocks.”
Ethan describes after his TBI he “had to learn how to learn.”
That means I had to learn how to take notes, I had to learn to categorize things, I
had to learn how to structure my time, I had to learn [to use] my calendar
book…That’s because I had a good rehabilitation counselor, someone to tell me
what to do. I mean they’ll get you onto a systematic remembering, you need to
structure yourself this way, this is what you need to do. Instead of just going to
class and taking notes you need to know today at nine o’clock class started and
the instructor went over this so I wrote in my little calendar book, at nine o’clock
class started and the instructor went over this, we watched this film, we read this
chapter, homework assignment is this. Then I go home and read over my notes,
do my homework assignment and the next day in class I’ll remember whatever it
Ethan found rehabilitation to be very helpful in helping him learn.
I learn easier with hands on work, whether it be math, or doing projects in class as
a group, or where it’s actually almost like doing work like a job, we’re all
working together, I find that a lot better, more enjoyable…when someone is
talking and showing physically I learn better.
Ethan also finds using tutors and going to instructors for individual help in preparing for
tests helpful.
Ethan describes the best learning environment as:
not a lot of people, no music, that’s distracting…I’ve got to hear myself
think…there would be counselors or teachers working around the table talking to
each person telling them about what he’d been talking about. Even if you had
paperwork in front of you and you were doing it…the instructor would come over
and watch me do it, instead of coming over and ‘do you have any questions?’ I’m
talking about coming over and saying ‘OK Ethan, I see you’re doing this have
you ever considered this? Tuesday when we were talking about this, put that into
that experience, remember on this or that when that happened, well then consider
that’. Having an instructor help you that that way is great.
Emma finds learning easiest when she is just sitting and talking with experts on
the subject she wants to learn. She also likes “researching stuff on the internet.” Jacob, as
with most of the other co-researchers, finds “that learning is easiest when I’m having fun
with it.” Jacob also believes to
see what they [instructors] think is important by writing phrases or key terms on
the board…Then I can expand it in my notes if I need to. But I’ll usually write
down whatever they write down on the board and sometimes it’s too much.
Almost all of the co-researchers describe problems they have with
communication, whether verbal or non-verbal.
Even when I began to speak, my words were quite delayed and choice of
expression, or language, was rather unusual and often confusing. It continues to
cause difficulties in my communication, to the extent of offending others
unintentionally…There certainly were times when I would jump the gun so to
speak in terms of my reaction and thereby my communication of whatever I was
experiencing [and] would sometimes either say things inappropriately or say an
inappropriate thing, in other words I wasn’t really in tune or aware enough of the
whole picture, big picture so to speak to give a more accurate and more
appropriate, more socially appropriate response to what was going on, and it’s
gotten me in trouble (Alexander).
This translated into difficulty in the classroom, “[I] didn’t feel that I could conceptualize
well and then speak on even well enough to ask questions sometimes.”
Olivia describes herself has having verbal dyslexia; “I have the tendency to say
things backwards.” She describes her communication as “getting lost…I can’t explain
things too well…my brain stops.” She says one of her major problems is language.
Emma thinks she has actually frightened other students in the classroom with her
I talk about stuff; I talk about my feelings and people don’t like to hear it, a lot of
people don’t want to hear what I have to say and I don’t realize it…I feel like I
ask too many questions and make too many comments…I use analogies or
whatever and people can’t keep up with me so they think I’m straying from the
topic and I’m not. It’s they didn’t get the analogy.
Logan initially had trouble formulating words when he first went to college after the
injury. He sees his speech as improving over time, the rate of his speech has become
quicker and he has found the courage to ask other students questions.
Several of the co-researchers describe difficulty in thinking, or their ability to
organize and re-organize data. Ethan cannot “learn the way I did prior [to the
TBI]…those days are gone, they’ll never come back.” Ethan feels this most strongly in
his attempts to learn math.
But see when you give me mixed up questions, like you’re going to do this
addition and this mathematical equation, and then you have to do this one, which
is very different, then you’re going to do this one which is completely different,
then I get confused, it’s never gotten better in twelve years. I don’t know what
I’m going to do about that yet.
Alexander saw a change in his thinking after his accident,
I had more difficulty grasping concepts than when I did before…I have certainly
found it to be more frustrating, both the process of absorbing information, and
academic demands themselves. I have especially dreaded assignments which
involved analytical writing. Academic reading is quite cumbersome for me, and
that is, I understand and personally sense, a process of cognitive processing.
He has also experienced “subjects that required more capacity than I had to get through
Olivia describes her brain as not having “the same edge” and that the way it now
functions is “like a whole new ball game.” She finds math difficult also, “even basic math
is hard for me now and it wasn’t before.” She finds she really needs a connection with an
instructor in the classroom because “if I don’t understand them then it’s kind of, I’m
pretty lost.” Jacob misses being good at math; “Times have changed.”
Three of the co-researchers have problems with organization. Both Olivia and
Jacob say they are not very organized; Jacob thinks the brain injury has made it worse.
Emma finds she has trouble organizing her thoughts, “maybe I should start making an
outline or something and try to stick to the outline but it’s hard for me to do.”
Processing Speed
Several of the co-researchers also talk about the speed at which they think, their
processing speed.
The head injury is there, I still see it did a little bit more damage because my
mother tells me you’re a lot slower paced, and I agree, I’ve really got to focus
more to understand more, working harder, it wasn’t like that prior (Ethan).
Logan finds just the speed of the classroom can be overwhelming, “I’d be trying to keep
up and he’d be going so fast I’d be like, shit, what was that, that I was just about to write
down?” He sometimes questions his own ability in class,
I feel like, God, was I not even paying attention? Was my mind totally not here?
Or sometimes you’re really with it and they ask you a question that’s not down
the same thought path that you’re on, the same order that you’re processing in I
Emma also finds the speed of the classroom can be difficulty, “I can’t keep up, they go
too fast.” Jacob does his best to “keep up with it all…I know that things take longer for
my mind to fully process the information.”
Frustration and anger. Frustration and anger are common emotions felt by the coresearchers when they perceived they were being misunderstood or under-valued. Ethan
is aware that he is a “very defensive person” and angrily describes two “debates” he has
had with instructors during class. This is a personality change for Ethan that occurred
after the accident. He states, “Everybody says I’m a walking time bomb.” However, he
believes his anger only erupts when he believes he has been wronged. He recalls having
his injury disclosed in front of a class. “That really pissed me off. She put a sign on my
head that said Ethan is a head injured retard; that’s exactly what she did to me, and then
nobody did anything to her.” After that,
I had a girl come over there, she kept coming over ‘Ethan do you need some help?
Ethan do you need some help?’...I’m getting pissed because this is what she is
doing and that didn’t have to happen if she [the teacher] didn’t open up her
mouth, you know?
He then describes how the class seemed to
look at me and they act as though…he [Ethan] needs special help; he needs
special arrangements, well no, it’s a head injury; it’s inside my head; you want me
to yell it in front of the whole class? I had brain damage!...I don’t know what it is,
but I know I’m not going to put up with it no more…I can’t be a classroom
assignment. I can’t be standing up there saying ‘Hi, my name is Ethan and I’ve
had a head injury; I’m disabled.’ That really pissed me off.
Alexander also occasionally gets angry in class although he was not sure if it was
visible or apparent to other people.
I noticed a bit of distress that came with not feeling understood by
instructors…There were times that I would have honestly catastrophic fantasies of
how this might play out, like you know yelling or making a scene of some kind,
or writing a nasty letter to them or about them, reporting them various things like
He also finds frustration outside of the classroom.
There were a number of times actually that I would come to a copy machine and
find it quite counterintuitive in terms of using it, even if it was just where to place
the page, and I would often get incensed, I would sometimes lose my cool in the
Alexander sought help in dealing with his “volatile levels of stress” through
counseling and medication. He saw these issues as “causing me a fair amount of distress
in learning or in the academic process” and both counseling and medication have helped
a great deal.
Emma also demonstrates and describes anger involved with school and learning.
She has had some difficulty in meeting with her Disabilities Coordinator to set up her
accommodations. She states she is
really angry right now at my school because I qualify for the Americans with
Disabilities Act, I qualify for accommodations. But the school says that their
policy is, even though I have a letter from my doctor, even though I applied for
services I did not actually have a face-to-face interview with the Disabilities
Coordinator so the school’s not legally liable for accommodating me, which
means that I got A’s on every paper, every project, every assignment, every
communication, for this class but somehow she gave me a B for the class…[the
Disabilities Coordinator] has a lot of fricking nerve to tell me now that school is
not legally responsible for accommodating me because I didn’t follow through;
that pisses me off!
Emma definitely feels frustrated when she is “graded wrongly.”
Olivia remembers when she first started college. She “couldn’t go to class cause I
would always walk out and get agitated and leave.” The school counselors worked with
her to help her slowly adjust to class. “They’d let me in the classes, maybe an hour even
though it might have been two or three hours [the classes]” and she eventually developed
the ability to sit through the classes. Olivia describes an instance of public humiliation by
a teacher. She was called up to the front of the class to meet with the teacher for an
She called my name up that particular day and she was talking out loud that
everybody could hear, but all the other students were working on the computer,
doing their writings or whatever and she just humiliated me and told me that I
would never pass and I needed to withdraw. That’s what she said too in front of
the class. It’s like there was maybe 10 or 15 minutes of class left and I just, I just
was quiet now. Get out of there…So what I did was I went to the office and seen
my counselor…and then I went to the…top people in the English department
too…It seems some people think since I am quiet and have a lot of special needs
and am slow I’m going to take it, which is this lady got a rude awakening.
Logan describes feeling frustrated when he accidentally took Business 101 after
having taken Business 201.
I thought I’d breeze through it. The teacher and I didn’t connect so finding a good
plan to handle it was hard. It had tons of people and I begged for help, sometimes
not catching on and took tests privately…I was frustrated where I wasn’t getting
these concepts and I felt like he was teaching it at a simpler level, or I don’t know.
I was just frustrated that, yeah that’s it, I wasn’t getting it and I thought I would.
Logan also describes feeling embarrassed when called upon in class, “I learn OK if it’s
interesting enough to hold my attention, but not if it gets over my head. I sometimes
can’t recall what was just said which looks bad.”
Depression. Depression is another emotion Emma and Alexander feel that affects
their ability to learn. Emma talks about missing a class at least once a term, often from
“deep depression, I just can’t do it.” She writes about feeling depressed and
“overwhelmed with homework to do.” Alexander also struggles with depression.
At times, I grow despondent and just don’t want to think about potential, or my
future or getting things done. I just want to be, in fact I’m even thinking about it
now, after this is over, will I go home and just wrap myself under my blankets or
will I be able to get some needed work done?…The additional pain that one
experiences with whatever mental challenges they are facing like depression, give
depression that much more kind of a hold on you…that certainly has been my
experience, and it’s been one more thing to kind of debilitate me, to prevent me
from, one more obstacle to get over.
Anxiety. Several co-researchers also struggle with anxiety. Ethan carries a small
notebook with him to take notes during the day, “I’m a little nervous, it’s a fact, so I carry
this with me.” Emma talks about spending 18 hours a day worrying about her homework
and she worries about being able to perform, as she would like to. “I’m very much afraid
to take an actual neuroscience class, or a real math class.” Olivia uses her laptop to
communicate her feelings to others, “especially if I’m really mad or agitated or nervous.
I’m not a nervous person but I get nervous real easy.”
Loss. All of the co-researchers described different losses due to their injury. Ethan
cannot “learn the way I did prior [to the TBI]…those days are gone, they’ll never come
back.” He has also noticed a loss of processing speed and memory. Alexander now has
“more difficulty grasping concepts than when I did before [the TBI].” He also has lost
ability in memory; “I could read a page in the handouts we were given or the books we
were assigned and wouldn’t remember much about what I had read immediately
following that.” Olivia finds that “even basic math is hard for me now and it wasn’t
before.” She has also experienced loss related to her memory; “It’s kind of like…having
a toddler’s brain in some areas.” Jacob has also noticed more difficulty understanding
math after his TBI, “Times have changed.” He has also noticed a loss in organizational
abilities and processing speed; “I know that things take longer for my mind to fully
process the information.” Logan has noticed a loss of processing speed that affects his
ability to keep up in the classroom. He has also noticed a short-term memory loss;
“Somebody says something that’s totally off the subject, or asks me a question that I’m
not able to keep saying that thought over and over in my head, then it’s gone.” Emma has
also lost memory ability.
Ethan has lost friends. “I’ve lost a lot of friends. I lost my friends because I chose
to.” Logan didn’t move on to college the same time his high school classmates did due to
his TBI. He then found he didn’t have “any of your old crowd of friends, or anyone to
hang with” once he did start. Emma has also found a loss of relationships after the TBI;
“I’ve alienated people.”
Alexander, Ethan, Emma, Logan and Jacob have difficulty with fine motor skills,
specifically hand writing although Alexander and Jacob both see it improving over time.
Jacob has lost much of his ambulatory ability and is working to recover it. Alexander
notices he has less dexterity with his right side. Logan has lost his ability to drive due to
his seizures and is hoping to get that back again.
Happiness. Some of the co-researchers also talk about happiness they feel. Jacob
remembers environmental law and policy,
I think I got a C in it. I was really happy about that. It’s a pass. I was super
happy. It was the first time I got in front of the classroom and gave a big speech
too. It was the first time anybody had seen me walk in school before.
Until that time, Jacob had always used his wheelchair. Emma feels “really good when
learning.” Logan describes a meditation class he took and “felt relaxed around others in
my class and my teacher. Everything was happy and I walked outside on campus feeling
comfortable and smiling. I even ran into old classmates and had a friendly reunion.”
Alexander remembers
feeling best about my efforts when they ultimately either demonstrated for others
an alternative or creative approach to something that had not been used
conventionally, or when my work actually provided a finished product or use for a
need beyond the academic purpose.
Finally, reaching the goal of graduation is something Ethan is very excited about, “I’m
going to be happy when I’m finally done and get that piece of paper that I’ve graduated.
I’m starting to feel old out there. I’m starting to feel old.”
Socialization is an important part of the college experience and the co-researchers
have varying experiences. Alexander sees himself as
pretty extroverted when I’m outdoors and I’m in society anyway, I do that well,
and I think have a certain skill for it…Well, as much as academics are part of
learning, involving oneself in community projects, the community being
the…university student body, you’re really developing your mind and your sense
of purpose and leadership by engaging in these various activities…I mean as
much as I like being with friends, when I’m not with friends I certainly become
fairly reclusive. My time with friends is very intentional, not just so that I can be
with them in some venue where we’re supposedly engaging, like a bar or some
loud place, I really like to get together with friends individually and independent
of outside interference.
Alexander also enjoys the social part of class, just going and sitting and being with other
people and the energy that is going on. He also finds that just sitting next to someone
who is actively studying is conducive to learning, as if that energy flowed to him and
encouraged his studying.
Ethan also finds he does
better studying with somebody else, yeah, because I’m able to talk and get a
response, beside in my own brain…I can get a different point of view or get
reminded of something or have somebody else tell me ‘no, the instructor meant
this, not that’, makes it a lot easier.
However, it is a different story when it comes to informal socialization.
But do I socialize? Networking sort of? Absolutely not, I don’t even know
anybody by name. I know the instructors, I know a couple of the counselors, I
know a couple of the teachers pretty well, that’s it. If I go past a pretty girl, I say
‘hi’ and that’s about it…You know, I’ve lost a lot of friends. I lost my friends
because I chose to. They’re immature and they don’t need my friendship
because…I used to be like that too, so you know, I feel bad for them now because
they have no heart or feeling or compassion towards…I used to be those people
Logan found when he started college that “it doesn’t have any of your old crowd
of friends, or anyone to hang with.” He does find it enjoyable and helpful to study in a
cause they definitely know their information very well, or a lot better than you do
because if you’re brain injured they can throw out a lot of things, ‘oh don’t forget
this important stuff’ and ‘oh, the teacher said this, make sure to remember that’,
so I’ll be like ‘oh God, good point’…I like working with other people where
they’re sharing information with me so I’m driven to be able to help them, return
the favor, I mean I’m more motivated to return the favor.
He had an experience where he “developed a good relationship with a geeky girl and we
studied together and she helped me through the class.”
Jacob also liked working in groups for learning.
It’s cool. It works, like every once in a while I find a neighbor and just talk with
them about what you’ve found, what you’re writing right now, it works. I just
have to go to the person right next to me, whether I like them or not.
Jacob still has “friends to hang out with too.” He sees his friendships still the
same compared to before the TBI, “with all my good friends at least, but some not so
much, I don’t know why.” He does not see himself as very social on campus in an
informal way however, “I guess not, not really, it would be a good idea though, yeah, that
is a good idea, why not?”
Emma also likes group work, “because I don’t have to explain myself to a large
audience, I can just explain myself to a few people, and I can learn from what they have
to say, as opposed to lecture.” She struggles with informal socialization however, “I’ve
alienated people that have tried to help me cause they may show up to take me
somewhere and I’m sleeping and it’s because I’ve been up all night…all the social
conventions I really didn’t grasp.”
“Actually I like to socialize more [since the TBI]” (Olivia). She does not like
group work for learning however, “I don’t know, every time I go in a group most of them
don’t do anything, they just sit there. And it’s like one or two people do all the work. I’d
rather do it myself.”
Disclosing their injury to others is another issue five of the co-researchers grapple
with. Olivia tells others about her brain injury “just in certain situations”, she shares
when it appears an instructor is having difficulty understanding her struggles. Alexander
has shared “about 2/3 of the time” in order to access accommodations. Ethan finds it
frustrating that he is sometimes forced to disclose. He describes his disability as
“hidden” and has had instructors question his accommodations because he does not look
different than anyone else. If asked about his brain injury, he will disclose. Logan just
discloses up front with an instructor, “…hey, I’ve had a brain injury and so just
understand that.” Jacob however struggles with telling anyone about the brain injury, “I
don’t want them to know too much about me, I don’t know, I don’t know why that
matters so much, I don’t know.”
All of the co-researchers describe barriers they face in trying to learn. Jacob faces
many physical barriers due to his wheelchair whether it is a bathroom without an
automatic door opener or a building with an inconvenient elevator. One building in which
he has several classes has stairs on one side, “something I can’t quite do yet,” and to get
to the elevator “you have to come all the way to the other building, like go outside and go
across the walkway.” Getting around campus is “pretty slow moving if I’m in the
walker…and my hands get dirty if I’m in the wheelchair and I don’t really want to wear
gloves to school cause it would be hard to get into class and write.” Jacob also has trouble
with his vision, “So I can’t see all the way to the left, yeah, it’s really crappy” but he will
not change position in class to help with his vision. When asked why he responds “So no
one knows that I’m disabled.” He would also have difficulty changing positions because
he requires a wheelchair-accommodating table and there is usually just one of those per
classroom. Ethan also has difficulty with foggy peripheral vision. Olivia also has trouble
seeing in the classroom, she “squints” if the writing is not large enough to see the board.
Finding a note taker has its barriers.
Sometimes I have trouble taking enough notes for an instructor. Whenever this
happens I know I can sign up for a note taker from my counselor, but then it’s up
to me to find the person to take notes which is somewhat awkward…I mean,
who’s going to want to take extra notes for someone? Or just take notes and like,
take the time to give it to you too? I mean it takes more time to do it, so, who’d
really want to? It takes a kind and caring person to take notes for someone else
who needs it, I think, it’s real hard to find these days…it’s a little bit of work to
find one, so I don’t want to make extra work for someone who doesn’t really need
any extra work (Jacob).
Alexander also struggles with getting a note taker,
if anything it was an extra thing to do, to have someone meet with me after class,
make photocopies of their notes, get them signed up to begin with, get them paid,
etc. So I think because of that, perhaps to some degree that the stigma that’s
attached to it, to some degree, I decided not to.
Olivia understands the policy for note takers at her college is
the instructor is supposed to ask the class in general if they want to volunteer to
take notes, they’re not supposed to say the name…it just doesn’t work for
me…sometimes I can’t read the writing and sometimes my English is not,
comprehension is not enough to understand what they’re writing. So sometimes I
just opt not to even take it [the accommodation].
The timing of classes is also a barrier. Jacob has trouble doing well with morning
classes, “like I’m not a morning person at all.” He does not take morning classes
anymore, “I take them in the afternoon usually. Like my class now is at 1:00 PM, that
ends up being a lot better for me.” However not all classes are offered in the afternoon,
“I just didn’t have much of a choice, like I want to take environmental classes but all they
have are in the morning.” Logan also has trouble finding classes he needs in the
afternoon. “That definitely has been a problem, or those classes fill up the quickest…this
summer semester there wasn’t hardly any classes that weren’t early or just weren’t
online.” Alexander has “typically sought classes that are not earlier than ten AM,
although I’ve taken classes that have started earlier, often resulting in being late to them.”
Alexander has had a few instances of instructors not wanting to honor his
I can think of one, maybe two instructors who were like that, who clearly showed
some discouragement in providing me with more time, but would do it simply
because it was perhaps easier for them to than to have to begin some kind of
struggle with me or have to fail me.
He also finds instructors don’t understand his struggles, “Just maybe questioning me,
like why can’t you do it like every other student? Or how hard can it be? Or couldn’t you
just try a little harder?”
Olivia and Emma both find the style of the classroom instruction can be a barrier.
Emma finds it difficult “when it’s taught in a male dominated kind of way, you know,
structured, kind of standardized, marginalized, I don’t even want to take those classes.”
She feels “the isolation and the competition, a lot of competition in those classes.” Olivia
describes having trouble learning in the traditional classroom, “you go in the classroom
and they do lecture and all that and they give you paper, you take a test, and that’s
traditional.” “I just can’t see myself sitting in an auditorium having to pay attention and
write notes and take a test.” (Emma)
Good Teacher
Five of the co-researchers have had experiences with “good teachers” and want
this experience again. Jacob had an instructor for several classes that really
cared for people who were just like the underdog and stuff like that…he would
just make sure that I was getting everything that I needed, get that taken care of in
class, if we were going somewhere he would ride the elevator with me just to
make sure that I could make it…he immediately noticed a person in the back who
needed a helping hand and offered one right away…he liked hearing my story and
all of my challenges along the way.
Jacob felt understood and appreciated. Emma found something similar, an experience
that with an instructor that touched her, “she walked up to me and she said ‘I can see this
is very difficult for you to come to class and I just want you to know that I respect that
and I’m proud to be your teacher’.”
Logan talks about the rarity of developing a connection with an instructor, “you
rarely, rarely get real connections.” He describes one instructor that he did connect with,
“you seemed to really understand my situation…just my intelligence situation or my
emotional situation, I always seem really comfortable around him and happy to work
with him and learn what he was teaching.” Like Emma, Logan experienced an instructor
giving him personal encouragement and praise, “when it was like wow, Logan, you get
this, and no one else is, no one had the answer, he would tell me that outside of class, so
he was a lot of motivation and just inspiration.” Ethan also finds the connection with the
instructor is very important, “my favorite instructors tended to be those who showed
personal concern for me, not even my work necessarily, but for me and my situation with
coping in school.” Alexander also finds the best instructors are ones he connects with on
a personal level; “he and I went golfing too.”
Online Learning
Four of the co-researchers have very strong feelings about online learning.
I’ve also decided I can’t, I’m not going to do online classes anymore because I
have to have the, someone telling me the information rather than reading it, and
using it, I have to have personal hands-on experience I guess to ingrain the
information (Logan).
He enjoys the flexibility of schedule with online but needs the personal interaction.
Emma also like the flexibility, and not having to “deal with people other people
distracting you”, but she would rather take classes on campus. “My experiences so far on
campus, classes are more real I guess and you get more response from the teacher, you
get more help, you know, and you get help from the other students more.” Alexander
finds he has a “certain disdain” for online learning, “if anything because of my affinity
for the classroom environment in terms of learning with other students, in terms of
[learning] directly from an instructor” and Ethan just is not “motivated enough” to take
online classes.
Jacob notes, “Gotta do it, the office for students with disabilities.” All of the coresearchers have had experiences with the Disabilities Resource Center (DRC) or
sometimes called the Office for Students with Disabilities, some more positive than
others. This office is required for students who want to have accommodations in their
classes. The accommodations are tailored to each student and include note takers,
separate testing areas, extra time for tests and assignments, recorders for classes and other
Jacob sees his counselor at the DRC “when it’s time to sign up for classes…that’s
about it.” He uses her advice in choosing instructors.
She knows so many of the teachers here, ‘[instructors name] is a great friend of
mine and you guys will get along’, and yeah, he ended up being my favorite
teacher…I can get a note taker, I can get time and a half on a test, I can, let me see
what else, note taker and time and a half on tests seems pretty good…For one of
my environmental classes I had a great note taker…I just had to get a ton of those
note taking papers, I had to get my note taker a ton of them…but then it’s up to
me to find the person to take the notes which is somewhat awkward.
Jacob has only used a note taker once, since that time “the classes just haven’t seemed as
hard as that, so I don’t think I really need them…if I get another tough class I might as
well…And I can have a private test taking area also.” However, Jacob does not use the
private test taking area. “No I just take it with everybody and if I need extra time I’ll take
that, then I get time all by myself to work on it.”
Nearly every instructor at my two years of university provided some sort of
accommodation, always in the form of additional time or extension on my
work…sometimes considerably more time…like even taking incompletes and
turning things in weeks later, months later…I think I’ve used the incomplete
process in about one third of my classes, maybe just one fourth of them…and
otherwise I would be given until perhaps the last day that grades were due to turn
something in…which is often at least a full week after classes end, which is a lot
more time (Alexander).
Like Jacob, Alexander has not utilized a note taker much.
It may have been just that one time, I can remember clearly only that one time, in
that science/sociology of environment class having someone actually take notes
for me…I think because not only was it a complex course but that I would have
trouble getting there first thing in the morning.
He used the note taker so he could “either not be as stressed about the notes I took and
just kind of get some of the main points, also so that when I would come in late I would
at least have some of them covered.” Alexander has used the test taking accommodation
I think there was another class I used the testing services of the DRC, so that
when tests were given I was put in a different room, taking the test at a different
time and given about one and a half times the regular students would get.
Olivia does not always use accommodations, “you don’t always take every
accommodation and you don’t always tell them why you have the accommodation…like
the note taking is pretty much the only one recently I’ve taken in the last year.” She also
takes extra time on tests, “I get double time”; and she does take tests in a separate place.
She has had a unique accommodation as well, the use of an FM amplifier. “I used to have
an FM amplifier and that helped a lot, especially with some instructors. I always heard
things but with the amplifier it made it easier to understand what they’re saying.”
Logan, initially when he began college classes, did not know what types of
services were available to him, “so I started at the very basic level of classes and I didn’t
even know how much potential the college had to help me.” However, he became aware
of the DRC and has used a note taker once.
I had one one time in accounting, and it, she, was really helpful…other times I’ve
been offered to do that and it’s just not important, it wouldn’t help me in any way
I feel. It’s more important, well I guess the person taking notes, a couple times I
wouldn’t take notes at all, they would take the notes and I would have my
complete, one hundred percent focus on what the teacher was saying and what the
teacher was giving examples of up on the board. I can maybe follow along with
that on my paper, but not exactly notes and what definitions he’s giving and stuff.
They can write that down, I just want to keep up with the whole process, his
thought processes, and that helps me.
He also tried to record the class once,
I got it, it was the old tape style and it was really stupid and you could only get
ninety minutes and I played it back and it was not quality sound and it was just a
dumb idea. I thought, God these are stupid. How could anybody use these now,
this is the, we’re in the next millennia or whatever, it’s not the eighties.”
He believes a recorder might help him but wants the option of having a digital recorder.
Logan also feels some guilt about using accommodations, he is not sure it is fair for him
to get accommodations and other students do not.
Ethan has never used a note taker, but has developed an understanding of the
services he does want to use and how to access them.
The counseling office is free, besides counseling there’s tutoring which is free for
every class, and they’re fantastic the way they help…I have to have a tutor,
because even though I’m reading something I need somebody there…it helps, I
do better with it than without it…
He also uses testing accommodations.
I’ve got the luxury of being able to take the test privately…they give me that
leeway, I do so much better when that happens…The day I meet a new instructor
I introduce myself, ‘Hi, I’m Ethan’ and then I’ve got a form the school gives me
to give to each instructor to say Ethan’s got a disability…and it’s called an
accommodation form. Therefore the teacher has to say ‘OK, what would you like
for me to do for you? Would you need to sit in a certain area of the room? Do you
need to have a tape recorder? Do you need to have your testing done privately?
What do you need?’ They have to do that.
Emma struggles with asking for accommodations.
If I ask for accommodations in advance, which I never do because with my
disability you don’t know until it actually happens that you need the
accommodation, how am I supposed to know in advance when I’m going to need
more time? I don’t know, until I actually need more time, you know, but I should
ask for it long before that class begins…On the placement tests I didn’t think to
ask for more time beforehand and it was only until time was up that I realized if I
had asked for an extra fifteen minutes I could have gotten to the nine problems
left unsolved.
All of the co-researchers describe how they see themselves since their injury.
Olivia does not think her brain works well, “I can’t do a lot like a lot of people can.”
Ethan also sees himself as needing help the other students do not need. Alexander sees
others as “normal” and works at “normalizing.” He sometimes wonders why he cannot do
things “like very other student.” Logan describes feeling “dumb” and thinks it looks bad
when he cannot remember things. Emma thinks instructors think she’s “lazy or
irresponsible, and they judge me accordingly and treat me accordingly.” Jacob describes
students with brain injury as “just below the cut” and refers to himself as hopeless when
he cannot remember things.
Five of the co-researchers also express self-awareness of how the injury has
affected them. Jacob describes figuring out how his body works. He is also very aware
of his problems with memory. Logan knows he damaged the right side of his brain, and
realizes that number processing is now his strongest academic strength. Emma realizes
she now struggles with the concept of time. Alexander sees himself as less ambitious
than before the injury, he also sees himself as being better at assessing how he is feeling
or reacting to situations than he was earlier. He believes he has gained insight into his
own skill set, how he works and how he thinks. Ethan has learned how to accommodate
himself, and he sees himself differently than before the injury. He sees friends he used to
have as “immature” and having less compassion, he now realizes that used to be him and
he is different now.
The biggest issue the co-researchers deal with affecting their learning is memory
loss. It is pervasive throughout their daily lives and colors how they connect with the
world and how they see themselves. Even as they spoke of this issue, they would forget
where they were in the interview. “What was the question?...What was I talking about?”
(Logan) “I’m forgetting the exact question?” (Alexander).
Olivia talks about not remembering “a lot of things…there are so much gaps now.
It’s kind of like being a toddler, having a toddler’s brain in some areas.” Specifically it is
short-term memory loss. She is supposed to use a piece of colored plastic to help her
read, but she “can’t seem to remember to do that.” Memory problems affect her grades,
“Well like before [the TBI] I got A’s and B’s without a problem. Now I get C’s and D’s
and F’s and A’s and I’m all over the board.” Short-term memory loss is also the biggest
issue for Logan. He will even
get up and walk into a room, and forget why all the time. I sometimes can’t recall
what was just said, which looks bad…It’s hard to recall information when it gets
really in depth…so thoughts that I just thought of and if I have to have any sort of
pause, not exactly that extreme but, well it does happen sometimes, but anything
that would interrupt what I’m thinking pretty much. Somebody says something
that’s totally off the subject, or asks me a question that I’m not able to keep
saying that thought over and over in my head, then it’s gone. Maybe later I’ll be
like, oh yeah, that was it, but definitely the short-term memory, the immediate
recall of information that just happened pretty much. The sooner it happened and
the more immediate I have to recall it the harder it is, most of the time.
Memory problems affect his ability to learn when trying to study, “I definitely have to
have notes there because within, especially with the short-term it’s, ‘What was I
thinking?’ or ‘What was it yesterday?’, I just studied it, and I don’t even know where we
are in the chapter.”
Yeah, certainly memory is probably the biggest component of it, lack of memory.
I could read a page in the handouts we were given or the books we were assigned
and wouldn’t remember much about what I had read immediately following that.
He sees this as related to focusing. “I have always had some difficulty with focusing…in
terms of being able to read through say a page of information and only being able to
regurgitate if you will or recall a small fraction of it at the time.”
Emma also sees memory problems affecting her learning, specifically reading.
I can’t remember anything…Yeah, I mean it’s really frustrating to read something
and then I can’t remember what I read, so I have to go back and read it again, and
again, and again. I try to write about it while I still remember it…I have a real
problem with memory… I can’t remember anything.
Part of the problem also seems to be actually accessing the memories; “I know all these
things, but I don’t know that I know them until somebody asks me.” Although she
speaks of many problems with memory, she also describes doing “pretty well on tests,
because my short-term memory is pretty good, it’s like the answers come out of thin air.”
As we interview she realizes that she does not think she remembered to take her
depression medication for the day.
Having trouble reading due to problems with memory is a common theme with
the co-researchers. Jacob describes the problem as being “Just being able to remember
what happened last. Like when I come back to reading again. I almost have to go back a
few pages and just reread what just happened, to get the flow of things again.” He also
talks of accessing the memories, “see once I get a memory of it then everything comes
flowing back, it’s kind of weird like that, but yeah.” Memory is affecting how he
communicates, “Sometimes I’ll repeat like the same thing in a conversation too.” He
sees memory problems as affecting classroom assignments, “So wait, the memos due
today? Ahhh! Then I look at my assignment sheet and it’s like, oh wait that one’s due
every class. No way, how did I not remember that!” He struggles during the interview to
remember names of people, and says, “I can’t remember, that’s my biggest line in this.”
Now, the only problem that I have, I used to be a math genius as a teenager but
it’s the difficulty in the transition of my memory, remembering sequences,
remembering trinomials, binomials, the physics of it all, and doing all of these
formulas. I swear I never experienced so much problems as I do with that now
He goes on to describe his problem in memory by giving an example of how it affects his
the hidden disability part means when you say ‘OK, at one thirty we’re going to
go over to Applebee’s and we’re gonna get an apple pie’ and at one twenty five
you say ‘What are we going to do?’ And I go, ‘I don’t know, we’re going to go to
Kohl’s and buy a T-shirt’; there you go.
Many of the co-researchers talk about the memory aids they have developed.
Logan describes just needing one word as a key to accessing an entire chain of thoughts.
“Yeah, if I just see the word, yeah, I think oh yeah, this means this and I need to do this,
this and that because of this and I recall it pretty much totally.” He uses this technique in
several different ways to help his learning and memory. While taking notes in class,
just writing a word of each sentence, that will queue that memory for me…just a
word will, I’ll be like, ‘Oh yeah, this means this, which goes into this, and
this’…Notes help big time because seeing a couple words can help you recall
whole processes and stuff.
When word processing assignments,
I just say what I’m typing in my head or out loud and try to keep up with that, or
as I’m going I might think of another thought as I’m writing one thought, so I’ll
just hit ‘enter’ and type that thought and ‘click’ up to the other. Just type a word
or two of the thought and that could bring, then I could recall what I was thinking
of and include the information that I meant to.
Around the house
I find it helps a ton to write notes or a task card for what I want to accomplish
soon…often I’ll get up and go ‘Oh, I have to go write that down before I forget’
and I’ll jump and run off, and that’s why there’s pads everywhere, so I can just
reach over and write the thought.
Logan has also found studying with groups helps his memory. “And also I can picture
their faces saying the words to me or drawing out formulas or something. I can picture, I
can picture and remember that interaction better than I can remember staring at a book.”
He finds he remembers “pictures better than words or sentences.” Logan also recognizes
that a “recorder might help.”
Ethan also uses notes as a memory aid. He has developed two different note
systems; one is a small spiral bound notebook he always carries and the other a larger
‘calendar book’ “that can be left at home or that can be left in my school bag.” He uses
them for different reasons. The larger calendar he uses
so when I schedule my rides I have to have scheduled times so I write those down
on the days for the next two weeks...that’s what I live by for my scheduled
appointments, my homework from school, my appointments with my doctors, my
appointments with you and stuff like that, that’s fine, that’s my daily log book.
His other written aid, the spiral bound notebook,
it’s like a little spark, is what it is…So I carry it in my pocket…This never leaves
my pocket, the reason why? I don’t know what my day’s going to consist of, I
don’t know who I’m going to come across, I don’t know if the principal of the
school is going to call me into his office, I don’t know if an instructor is going to
say ‘Ethan’ can you remember to bring this to class tomorrow?...This is my
walking brain.
He does have to write more than a word in it,
I do have to say, ‘I met Heather today’, then I’ll remember oh yeah, at Starbuck’s,
I’ll remember it then, but I need something to kick me in the ass, to put in my
head, oh yeah, yeah, otherwise I get a little bit confused in trying to remember it.
Ethan also find auditory aids are helpful. He uses a tape recorder in class,
if I don’t I’m in trouble because I cannot speed write. I cannot take notes that
fast…It’s a little recorder, a little recorder with a microphone. If I’m sitting in
class with a lecture and we are going to be graded on lecture notes, you have to
write down everything they say, I can’t do it, I can’t write as fast as he talks, so I
turn that on so when I go home I can listen to it, then I can write it down at home.
While interviewing Ethan a song was playing in the background and Ethan interrupted
himself to say, “this is my favorite song, it’s how I remember my head injury.” This song
was very popular and played frequently on the radio at the time of his head injury; it
triggered a strong memory for him.
Jacob has also found it helpful to use a written memory aid. “I just try to write
things down if I know I need to remember them. I’ve got my planner that I have and for
any date that I need to keep in my head, I just write it down on that.”
Writing for the co-researchers refers to either the physical activity of writing, or
the process of composing thoughts. Olivia describes not being able to write in cursive,
she has “sloppy printing” so she prefers to word process although using the computer
give her headaches. Alexander dreads analytical writing and sees himself as “long
winded.” He prefers to write by hand, believing that gives a “better impression or a more
accurate impression of where your thinking lies.” Ethan knows he cannot write as fast as
before the injury, but he believes he is now more creative although he struggles with the
mechanics of writing. Emma struggles with the physical aspect of writing; she does not
have the patience to make the letters, and struggles with organizing her thoughts into a
coherent paper. Logan also struggles with writing fast enough in class, but enjoys the
creative process of writing. “I write everyday I guess, I write down notes and…pretty
much paragraphs of recollection of my stories.” Jacob never learned to word process
before the injury so he now believes he writes faster than word processing although his
handwriting is “really bad”.
Time Studying
All of the co-researchers discuss the time they spend studying related to learning.
Olivia does not think she studies as much as she should, although she studies “maybe a
couple hours a day”, four to five days a week. Logan sees himself as studying “three
times” more than he did before the injury, and sees that as three or four times more
studying than “a normal, average kid.” He says his studying is “never enough because my
GPA is low.” “I never spend nearly as much time as I needed to spend in order to learn
course material and satisfy course requirements.” (Alexander) Jacob also does not believe
he spends “the proper amount of time of school work.” He finds there is “just always
something else to do.” Ethan says he studies “about two hours a night during the week,
and then five hours a night on Saturday and Sunday.” Emma finds she spends more time
worrying about school work and about one hour a day actually doing it, although she
spends sixteen hours a day researching her own interests on the internet.
Four of the co-researchers share issues they now have with reading. Jacob has
found that with his memory difficulty he now has trouble reading. If he reads something
that takes longer than one sitting, when he comes back to it he has trouble remembering
what he read previously and has to re-read some of the information. Olivia finds reading
makes her tired, “it just doesn’t interest me anymore.” She is supposed to be reading
through colored plastic to help her focus better, but she “can’t seem to remember to do
that.” Alexander would “rather read off a computer screen, just because I’m less
attentive than one who typically reads through page after page in a book.” Logan also
prefers reading on a computer than a textbook, for him it is easier to search the web if he
has questions.
Fatigue in another issue that seems to affect the learning experiences of the coresearchers. “My brain gets really tired a lot…there were a couple, maybe two or three
times a week I didn’t do nothing cause I got too tired…I seem to do better when I can
take a nap a day.” (Olivia) Emma says it can just be physically tiring getting to class and
this has affected her schoolwork. She also struggles with fatigue related to chronic pain.
Olivia also describes fatigue related to chronic visual problems. Ethan describes the
fatigue related to traveling to school. Jacob shared a time he fell asleep in the classroom;
the instructor “…called me out on it, yeah it was horrible.”
New Skills
Some co-researchers see positive changes since the injury. Emma has just recently
been able to sit and read again. She notes, “That’s cool.” She also sees herself as being
more intuitive. Logan also sees positive changes; his learning is “becoming more and
more” as it was before the accident, and it is becoming better. Olivia now sees herself as
being able to do things she could not before the injury. She can now work on computers,
something she could not do before. Ethan’s writing has become more creative; he has a
“wider imagination.”
Four of the co-researchers describe having issues with pain that affects their
learning, although only three still see this as an ongoing problem. Logan used to have
headaches soon after the injury when he was “just getting used to the whole school
lifestyle…and now I either don’t notice them…[or] they’re mild and I really don’t pay
attention, I don’t linger or dwell on that.” For others though the pain affects their
learning. Olivia has migraines and cries a lot “because it hurts…I get agitated and
grouchy, I just want to sleep, light bothers me more than ever…I can’t think at all.” She
has missed school because of the headaches. Emma also has migraines that affect her
learning; she takes “a pain pill before I go to school.”
I could have headaches as frequently as twice a week…it will sometimes take up
to four or five doses of pain reliever…so they are not small headaches…I just
can’t do anything sometimes other than lie down and rest, I mean literally just
have got to get to a bed and lie down and close my eyes (Alexander).
He also struggles with back pain and finds that interferes with some of his school
Four of the co-researchers describe having problems with sleep with three of them
seeing this as affecting their learning. Olivia has been told she has seizures in her sleep,
and describes sleeping “like I’m semi-coma.” Emma has been told she does not
go into REM sleep, it’s not good. I sleep all the time and I never feel like I’m
rested. I’m tired when I’m awake, and when I get stressed out like when I try to
do my homework I just go lay down and go to sleep instead.
Logan was told he had damaged the “sleep center” in his brain,
so sleep was difficult for a long time…it seemed like I’d lay in bed for an hour,
hour and a half every time waiting to fall asleep, just laying there with my
thoughts, trying not to think but just fall asleep…and you have to get up for an
early class, it definitely affects test scores and just your complete consciousness
of the class, how much you listen.
His sleep problems are getting better, but he still does not take early classes. Jacob also
found he had the same problem with falling asleep and then being very tired in morning
classes, he has actually fallen asleep in class and had the instructor call him out. Like
Logan, his sleep problems are improving.
Four of the co-researchers describe enjoying and using the computer extensively.
Olivia “loves” her laptop,
since I have learning challenges and I can’t do a lot of things like most people,
that’s one way I can connect to my friends, my church, my games…I write a lot
better than I speak overall and that’s one way I’ve found that I can express my
feelings, especially if I’m really mad or agitated or nervous.
Alexander says,
I probably spend up to 95% of my time on the computers of just personal back
and forth, personal use, whether that’s emailing which I do a lot of with my
friends or a little bit of my own personal learning or research, maybe going to a
website that has nothing to do with school or topics, but I’m interested in.
Emma says she spends most of her time on the computer. Logan describes using Google
for searches while he is learning,
you type in the exact thing you want to know, you can even type in a question,
what is this, this and that? And it comes up with thousands of websites than
answer that question exactly and with a very, in a very bunch of ways and with
images, lots of options. Just Google knows everything, Google is God.
Minor Themes
Three of the co-researchers describe problems with initiation, whether that be
asking questions in the classroom or starting homework. Emma describes having
problems getting started on homework. “I am lacking inner resolve. I want to do the
work I just can’t…I distract myself a lot.” Olivia sometimes will not ask questions in
class. Alexander has problems with both; he struggles to ask questions in class or even
after class, and sees himself as procrastinating when time to do homework.
I have tremendous problems with self-starting and a number of strategies to get
myself to self start, none of which really seems to be any better, none of which
really seem to solve or resolve the problem I have with self-starting.
Two of the co-researchers describe the support they have in learning. Emma talks
about “the lady at grocery outlet, she’s always supported my learning…[and] my son
supports my education…He’s just encouraging.” Alexander also found support through a
mentor at a previous workplace, “he’s someone I could come to for everything from
proof reading to just a quick visit for some support.” This person wrote him a letter of
recommendation and said “whatever I set my mind to I could accomplish.”
Directional Impairment
Both of the women in the study describe problems with space and time. Emma
says she has trouble dealing with time and has gotten lost trying to get back to class after
a break. Olivia also says she is “not good with time and space…I still have severe
directional impairment…I don’t know directions, I don’t know my right from left, left
from right.”
Three of the co-researchers find distraction to be an issue. Olivia has problems
testing or studying if there are any distractions. She will get agitated in the classroom if
there is too much noise. Ethan also get easily distracted, “I get very distracted side
tracked…if you ask me to do multiple things without me writing it down, I’m gonna get a
little bit confused.” Emma also finds she distracts herself a lot.
Both Jacob and Ethan often take the lift bus to school. Jacob prefers to have his
mother take him because otherwise he has to schedule the lift bus “a day ahead of time
and then they’ll give you a half an hour window when you got to wait for them, wait and
wait and wait.” If Jacob does not schedule the lift bus or misses the lift bus he has to take
the “regular bus” and with all the transfers he is “exhausted” by the time he gets to
school. Emma drives to school, but really does not like to and Alexander bikes to school.
School Load
Ethan and Jacob both describe how fatigue has affected their workload at school.
“I took all hard classes, and I ended up having to drop two of the classes because I had
too much homework going on” (Ethan).
I just don’t take more than two [classes] at a shot…if I take two it’s pushing me
too hard, I think sometimes. One time I took two and it was just really high-level
classes and it just really got to me…I ended up failing Philosophy. (Jacob)
Alexander describes how when he first started back to college after the injury he took a
half-load or maybe ¾ load, but never went full-time. That is why it took “ten years to get
my two year degree.”
Emma is the only co-researcher to describe a near death experience, but this
experience has changed her life dramatically. “It seemed like it ripped me. It’s still there,
like an earthquake, you know, between that day and the rest of my life and I couldn’t get
across the chasm, I couldn’t hold on, I couldn’t cross the bridge, but I had to climb down,
cross the valley of the shadow of death, and climb back up. And now I’m over here.”
Emma described her experience at the time of the accident as being able to see
“my body in the driver’s seat and there was a large, white light shining in my body’s
abdomen…I felt happy. I felt warm and loved and care free. We all had each other.” She
had another similar experience a few days after the accident; “I was lying in my bed in
the middle of the night and suddenly the left side of my body started spasming and
shaking then just like that I popped out of my body. I felt a rush of love and peace and I
distinctly noticed the feeling of pulling out of my body and leaving behind all the
negative emotions and traumas and worries and physical pain that I lived with all my life.
I felt redeemed, like a good soul. I felt like I was shedding layers of life. I went deeper
and deeper into the universe. At first it was like taking a warm bath, then it was like
becoming warm water. I felt myself expand and merge into all there is and there was no
time.” She feels different now. “I feel a sense of compassion for every soul”.
Domestic Violence
Both of the women in this research described experiences with domestic violence.
Olivia attributes her brain injury directly to domestic violence. Emma stated she had
experienced domestic violence, but attributed her brain injury to a car accident. None of
the men disclosed any experience with domestic violence.
The purpose of this research was to give voice to college students living the
experience of learning with a history of traumatic brain injury. Using a heuristic
hermeneutic phenomenological model the data was gathered which consisted of the
written and spoken words of the co-researchers along with photos. Themes were
identified from the data to transform their experiences into the essential picture of the
phenomenon with variations unique to individuals also described.
Nineteen themes were found to be common among most if not all of the coresearchers. These included change, testing, ways to learn, communication, processing,
emotions, socialization, disclosure, barriers, good teacher, online learning,
accommodations, self-perception, self-awareness, memory, writing, time studying,
reading and computers. The words of the co-researchers have given a rich, detailed
description of this complex phenomenon.
This phenomenological study documented the lived experiences of learning for
six college students with a history of traumatic brain injury. Specifically these were
community college or university students who had experienced a traumatic brain injury
with resultant loss of consciousness and confusion. The purpose of this chapter is to
discuss the findings from the data analysis in chapter four. This information will be
presented in the following sections: summary of the results, discussion of the findings,
limitations of the study, recommendations for future research and the conclusions.
Rationale for the Present Study
The highest incidence of TBI occurs in the age group of 15 years-of-age to 24
years-of-age with many of these students preparing to enter college (Traumatic brain
injury in the United States: A report to Congress, 1994). The Individuals with Disabilities
Education Act (IDEA) has only officially recognized these students since 1990 and many
of these students are not receiving special services (Glang, Tyler, Pearson, Todis, &
Morvant, 2004; Savage, Depompei, Tyler, & Lash, 2005). The problems faced by
students with a history of TBI with learning in college, can only be truly known by those
students. Very little research was found describing the learning experiences of college
students with a history of traumatic brain injury.
The descriptive, qualitative research design of phenomenology was chosen in
order to give voice to students answering the research question: “How do college students
with a history of TBI perceive and describe their learning experiences?” This design also
gave voice to the students in answering a secondary research question: “What are the
factors that affect their learning experiences, both positively and negatively?” In this
study, Moustakas’ (1990) heuristic phenomenology methodology was used to develop a
creative synthesis of the experience of learning for college students with a history of
traumatic brain injury.
The co-researchers included six college students who had experienced a traumatic
brain injury in the past. Of the six co-researchers, two were female and four were male.
Five of the six were students at either a community college or public university, and one
student was co-enrolled at a community college and a private university. The coresearchers answered journal questions, took photographs and interacted with the
researcher in one-on-one informal interviews regarding this experience.
The analysis in this study involved the creative synthesis of the themes uncovered
in the transcriptions and photographs taken by the co-researchers into pure essences of
the experience. Moustakas’ (1990) model of heuristic phenomenology was used to
immerse the researcher in the experience of the co-researchers to ultimately create a rich,
in-depth picture. The essences surfaced to help guide a better understanding of this
The findings of this study consisted of the co-researchers’ descriptions and
photographs of their experience. Each co-researcher’s transcriptions and photographs
were analyzed and themes were uncovered that represented their lived experiences. After
the individual data was analyzed, a composite description was created. The themes of
each of the co-researchers were grouped with the overlapping themes becoming the major
themes and the more individual themes becoming minor themes.
Discussion of the Findings
An analysis of the major and minor themes revealed four essences of the
experience being researched in this study; consciousness, learning, social capital and
emotions. The themes of self-awareness, pain, self-esteem, new skills, initiation,
directional impairment, and spirituality seemed to cluster around the essence of
consciousness. The themes of testing, ways to learn, thinking, processing speed, barriers,
accommodations, memory, writing, time studying, reading, fatigue, computers, sleep,
distraction, transportation, and school load seemed to cluster around the essence of
learning. The themes of communication, socialization, disclosure, good teacher, support
and domestic violence seemed to cluster around the essence of social capital. The themes
of frustration and anger, depression, loss, anxiety and happiness seemed to cluster around
the essence of emotions.
Four of the major themes and two of the minor themes seem related to the essence
of consciousness, the awareness of a mental state. The major themes included selfawareness, pain, self-esteem and new skills. The minor themes included initiation,
directional impairment, and spirituality.
Five of the co-researchers expressed self-awareness of the effects of the brain
injury. Jacob, who struggled with ambulation, had become more aware of how his body
worked. He was also very aware of problems with memory. Logan believed that number
processing had become his greatest strength and was aware the injury had caused his
seizures. Alexander saw himself as less ambitious than before the injury, and perceived
he was improving on assessing his own feelings and how he reacted to different
situations. He believed he was more insightful regarding his own skill set and how he
worked and thought. Ethan saw himself as changed from before the injury; he believed he
was more compassionate, to others and to himself. Emma appeared to struggle the most
with self-awareness. She realized she struggled with tracking time, and although she was
aware she had deficits in communicating appropriately in social situations she didn’t
seem able to access that self-awareness during the situations. She was also aware that she
needed accommodations, but again didn’t seem to be able to access that self-awareness
when she needed it to ask for accommodations.
Seizures, tracking time and loss of initiative have all been described as possible
sequelae of brain injury (Ruoff, 2001; Donnelly et al., 2005; CDC, 2006). Lack of selfawareness may be a result of physical damage in the brain, anosognosia, or may be a
reaction to the immensity of the personal change involved in TBI (Patterson & Staton,
2009). Although many authors have described a reduced awareness of strengths and
limitations, a lack of awareness of impairments and needs, a denial of the disability, a
lack of awareness of personal challenge and a challenge in self-monitoring, many of the
co-researchers in this study seemed to be working on increasing their self-awareness
(Donnelly et al, 2005; Ylvisaker et al., 2001; Ruoff, 2001; Goverover et al., 2007).
Four of the co-researchers described an awareness of pain that affected their
learning. Logan had headaches, but they seemed to be resolving. Alexander and Olivia
had migraines that required them to go to bed. Emma’s migraines required her to take
medication before she went to school. Alexander also had back pain that would interfere
with school projects at times.
Pain is a component of self- awareness in that an individual will not experience
pain if their consciousness is fully engaged in something else (Pappagallo, 2005).
Chronic pain was found to be a common problem occurring with TBI (Ruoff, 2001). It
was estimated that “22% to 95% of individuals who suffer a TBI will experience a
chronic pain condition” (Gironda et al., 2009, p. 248). The CDC (2006) found persistent
headaches as one of the long-term problems with TBI. In their work with children and
adolescents with TBI, Hawley et al. (2003) described headaches as one of the most
frequently reported problems. The literature reflected the experiences of the coresearchers.
The evaluative component of self-awareness is self-esteem (Pajares & Schunk,
2005). All of the co-researchers described negative perceptions of themselves since their
injury. They used description such as ‘hopeless’, ‘dumb’, ‘below the cut’, ‘different from
other students’, and needing more help. Emma also thought her instructors viewed her in
a more negative light.
Ruoff (2001) described loss of self-esteem and confidence as common
experiences in students with TBI. Donnelly et al. (2005), also found low self-confidence
in research participants with TBI. In her qualitative work with college students with a
history of either an acquired brain injury or a TBI, Haag (2009) described many instances
of the students using negative self-descriptions. Due to memory problems, someone with
TBI may forget prior successful experiences and therefore have feelings of low selfesteem (Driver, 2005). The literature reflected the experiences some of the co-researchers
had regarding this theme.
New Skills
Some researchers saw positive changes since the injury. Emma believed she was
more intuitive and she had regained the ability to sit and read. Logan believed his
learning was becoming more like before the injury. Olivia could work on computers,
something she could not do before. Ethan believed his writing was more creative.
The concept of implicit memory appears to be relevant with this theme. “Implicit
memory involves information whose learning is only reflected by changes in future
behavior as a result of the prior experience without the client consciously remembering
the experience itself” (Zoltan, 2007, p. 209). People with TBI often exhibit impaired
explicit memory, however they are more likely to retain implicit memory (Watt et al.,
1999). This would be one explanation of why some co-researchers believed they had
more intuition or had somehow gained new skills; they did not remember learning it.
There were no examples found in the TBI literature regarding newly found skills or
improvements from the TBI.
Research has not identified a region of the brain dedicated to initiation, actions
taken to fulfill a conscious intention (Pockett, 2006). Three of the co-researchers
described problems with initiation; both in asking questions in the classroom and starting
homework. Both Emma and Alexander had problems with starting their homework.
Olivia and Alexander both struggled to ask questions in class.
“Some brain injuries also impair a student’s ability to initiate action” (Ruoff,
2001, p. 16). Ylvisaker et al. (2001) found one of the challenges with frontal lobe injury
in TBI was weak initiation. The literature reflected the experience of the co-researchers.
Directional Impairment
Both of the women in the study described problems with space and time. Emma
and Olivia had trouble getting to classes on time due to problems with direction and time
awareness. Olivia described having trouble telling her left from her right.
“The perception of time is grounded in the perception of events-of things
happening and the relationships among these events” (Lombardo, 2008, p. 8). Struggling
to be aware of events and remember events could impact the perception of time.
Geographic or temporal disorientation was another impairment students with TBI may
experience (Ruoff, 2001). Donnelly et al. described in their research, participants having
difficulty with left-right awareness and impaired orientation. Sohlberg et al. (2005)
described the difficulty in navigating in people with TBI, specifically with damage to the
parietal lobes, right temporal lobe and frontal lobe. The literature reflected the
experiences of the co-researchers.
Emma was the only co-researcher to describe a near death experience. This
experience seemed to have affected her as much as the brain injury. Johnstone and Glass
(2008) described how someone with a TBI could experience decreased right temporal
lobe functioning. A decrease in this functioning “allows for transcendental experiences”
and may be related to “a decreasing awareness of the self, which subsequently allows for
increasingly transcendental experiences (a sense of universal connectedness, greater
sense of unity over diversity, and decreasing awareness of self) (p. 868). They further
described decreased right parietal lobe activity as resulting in “a diminished capacity in
the ability of the self to function in the immediate environment, including difficulties
localizing the body in space…difficulties interacting socially based on problems
comprehending social nuances and difficulties in awareness of one’s deficits” (p. 869).
Emma displayed all of these deficits. There was little information found in the TBI
literature that reflected this theme.
Fourteen of the major themes and three of the minor themes related to the essence
of learning. The major themes included testing, ways to learn, thinking, processing speed,
online learning, barriers, accommodations, memory, writing, time studying, reading,
fatigue, computers and sleep. The minor themes included: distraction, transportation and
school load.
Five of the co-researchers had problems with taking tests. Alexander, Ethan and
Logan all found that taking tests privately in a quiet place helped. Logan and Jacob
specifically described some of the problem as lack of memory of the material on which
they were tested. Jacob described studying the material repeatedly and still had trouble
remembering it. Olivia found she performed better when she wrote on a chalkboard,
rather than on paper, but this also included having someone read the test questions to her
rather than having to read them.
According to Ylvisaker et al. (as cited in MacLennan & MacLennan, 2008), the
problem with test taking was short-term memory. Often with TBI, the long-term memory
was not affected but the ability to transfer information from the short-term memory to the
long-term memory was negatively impacted with the result being those students had
difficulty remembering the information from lectures and readings to use on tests. This
proved to be the case with some of the co-researchers.
Ways to Learn
None of the co-researchers liked learning in the traditional lecture format. They
preferred a learning experience that was experiential and practical. They all found ways
to become more successful in learning. A quiet environment and finding an instructor
who was interested in helping and willing to go at a slower pace was one strategy. For
some, working with other students or tutoring was helpful. Sometimes it helped working
quietly next to someone else who was also working on homework. Some other strategies
that worked with learning were using a note taker, developing a study plan with the
instructor, and finding diagrams that represent what needed to be learned. Ethan found
rehabilitation to be very helpful after the injury in terms of helping him develop
organizational skills, structuring time and note taking.
Because of the many cognitive problems related to TBI, these students may
experience difficult and inefficient learning (Ruoff, 2001; Ylvisaker et al., 2001).
However, Ruoff described how these difficulties actually provide information to students
about what does not work for them in learning, so they may try new methods of learning.
For many students with disabilities, experiential learning worked best (Briel et al., 2007).
The traditional teaching methods may not work for students with TBI, and instructors
have not been taught how to develop classes that recognize the cognitive and executive
functions involved in learning (Ylvisaker et al., 2001). The literature seemed to reflect the
problems some of the co-researcher had in class.
Several of the co-researchers found they had difficulty with their ability to
mentally organize and re-organize data. Jacob, Olivia, and Ethan found math in
particular to be very difficult. All three described having been good at math before the
injury, but now struggled with the concepts. Ethan explained further that part of the
problem was not being able to remember all of the steps required to perform
mathematical equations. Alexander found analytical writing to be very difficult. He also
described sensing he did not have enough mental capacity to hold all the information
some subjects required. Three of the co-researchers described problems with
organization. Olivia, Jacob, and Emma all struggled with organizing their thoughts.
The inability to process incoming data both flexibly and efficiently was
found in TBI (Williamson et al., 1996). Some of the challenges found in thinking
in children in brain injury included
weak control over cognitive processes, such as attention; disorganized
thinking and acting; relatively weak planning, problem solving, and
strategic behavior…relatively weak effortful learning and retrieval;
difficulty holding several thoughts in mind at one time…[and] concrete
thinking and difficulty generalizing” (Ylvisaker et al., 2001, p. 6).
Donnelly et al., (2005) also found study participants with TBI had a decreased
ability to categorize and reason abstractly. The literature reflected the problems
the several of the co-researchers had with thinking.
Processing Speed
Co-researchers also described their thinking as working at a slower pace. Ethan
found that his thinking was slower and he had to focus more and work harder. Logan,
Emma and Jacob found that at times they could not think as quickly as the classroom
pace required. Logan struggled with understanding why he could not keep up, while
Jacob understood his mind just took longer to process things now.
Arousal in a person describes both their wakefulness from one time of the day to
another and their ability to increase awareness quickly in response to a need. According
to Williamson et al. (1996), researchers hypothesized a disruption in arousal that accounts
for part of the decrease in processing speed in TBI. Ruoff (2001) also described how
students with TBI demonstrate “slow cognitive processes” (p. 4). “Difficulties sustaining
attention, performing two or more tasks simultaneously, ignoring distractions and
processing information at an adequate rate are among the most common sequelae” of TBI
(Willmott et al., 2009, p. 424). The problems the co-researchers had with processing
speed were reflected in the literature.
Online Learning
Four of the co-researchers described very strong feelings about online learning.
Logan found he needed someone telling him the information rather than reading it. He
also found experiential learning in a classroom with others more helpful. Although Emma
liked the flexibility of online learning, she preferred the face-to-face experience of the
classroom on campus. She believed she got more help from the instructor and other
students when in class. Alexander also preferred the direct socialization of the classroom.
Ethan stated he just was not motivated enough to take online classes.
The difficulties found in TBI regarding attention, memory, perception, processing
and problem solving also impact the use of online learning. Crow (2008) suggested
avoiding “cluttered or disorganized web pages” and “using unnecessary graphics or popup windows” when designing online classrooms (p. 55). He also suggested organizing
the web page in a logical flow, using titles and headings, making pages easy to navigate
and allowing extra time for work. There was little information found in the literature
regarding online learning for those with TBI.
All of the co-researchers described barriers they faced in trying to learn. Jacob
faced physical barriers due to his wheelchair. Jacob, Ethan, and Olivia all had visual
difficulties. Although he had trouble seeing Jacob would not change his position in class
to prevent others from knowing he had a problem. Jacob, Alexander, and Olivia had
varying difficulties in using a note taker. Jacob, Logan, and Alexander had difficulty in
taking morning classes due to fatigue, but had difficulty at times finding the classes they
needed in the afternoon. A few instructors did not seem to want to honor Alexander’s
accommodations; they questioned his accommodations. Emma and Olivia described
having difficulty with the traditional lecture format. Olivia stated she had recently been
diagnosed with central auditory processing disorder.
Visual impairments were found to be a common finding in TBI and can
negatively influence the learning process (Ruoff, 2001). The CDC (2006) has found
blurred vision and visual changes one of the problems found in TBI. An audiological
evaluation of people with a history of TBI was often overlooked; yet, a significant
number of people with TBI did have some peripheral and/or central auditory processing
dysfuntion (Musiek and Chermak, 2009). Goode (2007) discussed that students with
disabilities draw negative attention to themselves when they have to ask for help to have
their needs met. Several of the co-researchers had negative experiences when asking for
All of the co-researchers had experiences with the DRC, some more positive than
others. Jacob saw his counselor on a regular basis and relied on her advice for choosing
classes. He had note taking and test taking accommodations, but rarely used them.
Alexander also found the DRC very helpful, and used extended time for his work on a
regular basis as an accommodation. He also had note taking and test taking
accommodations, but rarely used them. Olivia took extra time on tests and took tests
privately as an accommodation. She also had used an FM amplifier previously and found
that helpful. Logan was not aware of the DRC when he first began college. Once he
found it, he got accommodations that included a note taker and the ability to record class
but only used them once. The note taker was helpful, but he found the tape recorder
antiquated. Logan also felt some guilt using accommodations; it did not seem fair to him
that others did not get accommodations. Ethan found the DRC very helpful and used
tutoring and private testing as accommodations. Emma struggled with accommodations.
She had the ability to ask for extra time with testing, but would not realize she needed it
until she was running out of time taking the test. Emma did not have the resources postinjury available to her the other co-researchers did. Her insurance did not cover much and
she struggled with healthcare providers understanding her injury because she did not
show brain changes on the scan she received post-injury.
Students with TBI were found to be “confused or unaware of the accommodations
and supports they need,” such as Emma (Ruoff, 2001, p. 15). According to Briel et al.
one of the greatest barriers is their inability to recognize their limitation and to
seek help. Even when a student is able to recognize his or her ability to function
effectively in an academic environment, he or she may not be able to use this
information to design remediation strategies (p. 24).
Other “reasons for not using accommodations include not knowing the process for
receiving accommodations, being embarrassed about having a disability, or trying to be
successful without using accommodations” (p. 24).
Not only do students with TBI struggle with accommodations, the schools
themselves struggle. A survey by Harris and DePompeii as cited in Kennedy et al.
(2008) showed of the 74 colleges and universities in Ohio “less than 9% of colleges
identified TBI as a diagnostic category in disability services manuals, 38% identified
students with TBI as a specific group, 39% had counselors who were qualified to work
with students with TBI, and the route for students with TBI to access services was
unclear” (p. 512).
Students with TBI, just as students with other disabilities, work to access their
accommodations. They must first find the DRC, next request services, and then provide
the required documentation to prove the need and finally work with faculty on
implementing the accommodations (Briel et al., 2007). Some of the accommodations
commonly found included “note taking assistance, taped lectures, reduced environmental
distractions or individualized instructions for assignments,” (p. 9) preferential seating and
extra time on tests.
Increased task completion time was one of the results of slowed processing postTBI (Tsaousides & Gordon, 2009). Alexander found extended time for assignments
remediated this problem and several of the co-researchers found extra time for tests
helpful. Ruoff (2001) recommended to counselors that they guide students in choosing
instructors they believed the student might work well with.
The biggest issue regarding learning for the co-researchers was memory loss.
Problems with memory were pervasive throughout their daily lives. Logan and Alexander
had occasional problems remembering what the question was during their interviews, and
Jacob struggled to remember people’s names. All of the co-researchers specifically had
trouble with short-term memory loss. Olivia could not remember to use a strategy to help
her read. She believed her memory loss had negatively affected her grades. Logan
experienced going into a room for something, and forgetting what it was. He also
described reading assignments and not being able to remember what he just read. Jacob,
Alexander, and Emma also could not remember assignments they had just read. Jacob
found it difficult to read long assignments or books because if he took a break, he would
not remember what had been happening in the story when he came back to it.
Alexander also saw this memory problem as related to focus; he had trouble
focusing on readings. Emma described reading material repeatedly trying to retain it.
Emma also described not knowing she knew things until someone asked her. She
believed the answers came out of thin air. She also struggled with remembering to take
her medication. Jacob found he repeated himself in conversations because he did not
remember what he has just said. He also had trouble remembering assignments and when
they were due, even if he had written them on a calendar. Logan, Ethan, and Jacob
described memory aids that worked for them. Ethan and Jacob used a daily planner, and
all three of them used many notes to remind themselves of things. Logan, Jacob, Emma,
and Ethan alluded to the embarrassment and frustration of their memory loss.
Memory loss and difficulties related to that loss including loss of self-esteem,
embarrassment about forgetfulness, and frustration with the loss have been described
many times in the literature (CDC, 2006; Hawley, 2003; Roncadin et al., 2004; Ruoff,
2001; Ylvisaker et al., 2001; Ruoff, 2001; Donnelly et al., 2005). Roncadin et al.
described working memory as “a construct referring to the computational ability to relate
old information to new, incoming information” (p. 21). They found children with closed
head injury had persistent working memory problems, even several years after the injury
and postulated these deficits would persist for many years after the injury. This would
impact negatively on a student’s academic ability, particularly math. There were many
examples of the negative affect of memory dysfunction in the literature, which reflected
the experiences of the co-researchers.
Writing for the co-researchers referred to either the physical activity of writing, or
the process of composing thoughts. Olivia had difficulty printing, and could not write in
cursive. Jacob, Logan, Ethan, and Emma also struggled with the physical aspect of
writing. Emma did not have the patience to make the letters. Logan and Ethan struggled
with slow writing speed. Jacob described his handwriting as “really bad.”
Alexander struggled with the composition of writing and being concise; however,
he preferred to write by hand. Ethan believed he was more creative in writing since the
injury, and Logan enjoyed the writing process. Emma found she struggled with the
organizational skills needed to write.
“Many students with brain injuries frequently experience difficulty conveying
thoughts in writing” (Ruoff, 2001, p. 7). Problems regarding motor coordination, such as
the fine motor coordination needed to write, as well as the organizational skills needed to
compose thoughts were also found with TBI (Trudel et al., 2009). The literature reflected
the experiences of the co-researchers.
Time Studying
Olivia did not think she studied as much as she should, although she studied a
couple of hours a day, four to five days a week. Jacob also believed he did not study
enough. Emma found she spent many hours worrying about schoolwork, and about one
hour a day actually doing it. Logan however perceived he was studying three times more
than before the injury, and it was still not enough.
According to Briel et al. (2007), students with TBI are often surprised at how long
it takes them to study; the study techniques they had developed before the TBI are no
longer effective. They are often frustrated with the feeling that their lower test scores do
not reflect the amount of time they studied. This theme appears to be reflected in the
literature regarding memory issues, however there was little specific information in the
literature regarding the significant impact of this problem as reflected in the lives of the
Four of the co-researchers shared issues with reading. Jacob found reading more
difficult due to his short-term memory loss. Olivia struggled with reading due to fatigue,
and had lost interest. Alexander and Logan preferred reading on a computer, partly
because they used the Internet to answer questions that came to them as they read. They
found it easier to attend to the reading this way.
Difficulty reading was found to be a common experience after a TBI (Ruoff,
2001). Difficulty with attention, commonly found in TBI may negatively affect the ability
to read (MacLennan & MacLennan, 2008). There was little information found in the
literature regarding reading after a TBI. Several of the co-researchers had problems for
varying reasons.
Fatigue was another issue that affected the learning experiences of the coresearchers. Olivia described her brain as getting tired and did better if she took a daily
nap. Some of this might be related to her chronic vision problems. Emma described
getting physically tired going to class, and the fatigue related to chronic pain. Ethan also
experienced the physical fatigue of getting to class. Jacob had fallen asleep in the
classroom due to fatigue.
Some of the more common physical challenges with TBI included fatigue (CDC,
2006; Hawley, 2003; Ruoff, 2001). According to Riggio and Wong (2009), fatigue was
“reported in up to 73% of patients post-TBI and may become a persistent and debilitating
symptom” (p. 167). The information in the literature reflected the experiences of the coresearchers.
Four of the co-researchers described enjoying and using their computers
extensively. Olivia used her computer for games and to keep in touch with friends.
Alexander spent a majority of his time on the computer either doing schoolwork, or his
own research or keeping in touch with friends. Emma also spent most of her time on the
computer and Logan loved using Google.
Falconer (2006) described how many people with TBI were able to attend to tasks
longer on the computer and found the computer less critical than interactions with other
people. Using a computer for enjoyment was also encouraged due to the cognitive
stimulation it provided. There was little information found in the TBI literature regarding
computer use that reflected the experiences of the co-researchers.
Three of the co-researchers found distraction to be an issue. Olivia and Ethan both
found external distractions added to confusion. Olivia could not study as well with any
noise and she became agitated in the classroom is it was noisy. Emma described
frequently distracting herself from work she needed to do.
Willmott et al. (2009) described an inability to ignore distractions as one of the
common problems someone with a TBI encounters. The literature reflected the
experiences of the co-researchers.
Four of the co-researchers had sleep problems; three of them described it as
affecting their learning. Emma did not sleep well and did not feel rested from her sleep.
This added to her fatigue and she would sometimes sleep rather than do homework.
Logan struggled falling asleep and also found he was fatigued during the day and had
trouble focusing. Jacob also had trouble falling asleep and found he was very tired in the
morning. He had fallen asleep in a class.
The CDC (2006) listed changes in sleep patterns and sleep disturbances as longterm problems found in TBI. Riggio and Wong (2009) described sleep disturbances as
occurring in up to 73% of the TBI population. This includes “difficulties in initiating
sleep, maintaining sleep, or attaining restful sleep as well as excessive daytime
somnolence” (p. 167). The literature reflected the experiences of the co-researchers.
Four of the co-researchers described how they traveled to school. Jacob and Ethan
took the lift bus, which required pre-planning and waiting. Ethan had no other option, but
Jacob would have his mother take him if he could. Emma could drive, but did not like
to, she was afraid of driving. Alexander usually would ride a bike to school. Logan had
lost his ability to drive.
Loss of driving ability was one of the major concerns for people with acquired
brain injury (Sohlberg et al., 2005). There was little information found in the TBI
literature that reflected this theme.
School Load
Jacob and Ethan described having experienced taking more classes than they
could handle. They found there was a limit to the amount of classes they could take at a
time. Alexander also found he could not take a full load of classes and be successful.
Ruoff (2001) suggested to academic advisors that they consider advising a student
to take a reduced coarse load. Todis and Glang (2008) and Stewart-Scott and Douglas
(1998) described the increased amount of work needed to pass courses and the difficulty
in carrying a full course load for students with TBI.
Social Capital
Four major themes and two minor themes seem related to the essence of social
capital, “the networks and norms that allow people to work together to resolve problems
and achieve common goals” (Chenoweth & Stehlik, 2004, p. 61). The major themes
included communication, socialization, disclosure and good teacher. The minor themes
included support and domestic violence.
Almost all of the co-researchers described problems they had with
communication, whether verbal or non-verbal. Olivia, Logan, and Alexander’s speech
were slow paced and they struggled with finding the right words. Alexander would often
offend others unintentionally by not being able to use the correct words to convey what
he meant to say. He also struggled with being able to self-inhibit a response until he
really understood what was going on in a situation; he would therefore make socially
inappropriate responses. Emma also struggled with this; she would share things that were
uncomfortable for others to hear and would not realize this. Both Logan and Alexander
had problems asking questions. Alexander was not sure of his understanding of the
information presented so he did not feel comfortable asking a question.
Hammond, Hart, Bushnik, Corrigan, and Sasser (2004) described some of the
subtle communication problems found in people with a history of mild or moderate TBI
as “difficulties in organizing narrative speech, following complex conversations, and
following social/pragmatic communication rules” that can affect their ability to socially
integrate (p. 316). Tsaousides and Gordon (2009) also described the difficulties in
communication post-TBI including “understanding conversations and instructions (oral
or written), responding to requests for information, expressing…needs and maintaining
conversations” (p. 175). Ruoff (2001) suggested that these students may have difficulty in
observing appropriate social boundaries and described how the slow cognitive processing
seen with TBI may be manifested in slow “responses to questions or demands” (p. 9).
Donnelly et al. (2005) found in a study of participants with a history of TBI a lack
of self-control, bluntness in speech, and general discourse problems. Lew et al. (2005)
described impairment in affect recognition, particularly negative affect, in people with a
TBI. Adolescents with TBI struggled with evaluating the “behaviors, intents and feelings
of others” in their social world (Turkstra et al., 2004, p. 254). The literature had many
examples that reflected the experiences of the co-researchers.
All of the co-researchers described struggles with socialization. For some the
struggle was with informal, casual socialization; for others it was with the more formal,
goal oriented group work of the classroom. Alexander liked both the socialization found
in the classroom and more informal socialization with friends; however, he realized that
he tended to be reclusive and so worked at providing himself opportunities for informal
socialization. Ethan also benefited from formal, goal oriented group work; however, he
struggled with the more informal socialization on campus. Ethan found that he could not
relate as well with younger students. He also described how he had lost friends he had
before the injury; he felt they did not understand him now. Emma, Jacob, and Logan also
enjoyed studying in groups. Logan missed the friends he had in high school before the
injury. Jacob continued to see some of his old friends after the injury, but others he did
not, and he did not know why. Jacob did not see himself as very social on campus.
Emma also struggled with informal socialization. She described just not understanding
social conventions. Olivia did not like formal group work; she saw herself as doing all of
the work. She did enjoy casual socialization however.
According to Brown et al. (2003), socialization for people with a TBI can be
difficult due to the cognitive, emotional and behavioral changes often seen. Social
participation was found to be “more important to individuals with a disability than to
those with no disability” (p. 266). Ruoff (2001) described a common experience in
college students with TBI was disconnect with peers; however the college experience
also provides an opportunity to regain socialization skills with age-appropriate peers.
Ylvisaker (2001) and Hawley (2003) described frequent loss of friends and awkward
social behavior in children with TBI (2001). Donnelly et al. (2005) and Lew et al. (2005)
found social withdrawal as one of the characteristics of people with TBI. They also
described breakdown in personal relationships as a frequent consequence of TBI.
Stewart-Scott and Douglas (1998) found relationships with friends changed for college
students who experienced a TBI. Research performed by Brown et al. (2003) found
depression and fatigue correlated with decreased socialization; they recommended their
treatment. They also found the longer the time from the injury, the greater the
socialization. The struggle with socialization found in the literature reflected the struggle
of several of the co-researchers.
Disclosure was another theme that five of the co-researchers grappled with. Olivia
disclosed her brain injury to an instructor only if the instructor seemed to be having
difficulty understanding Olivia’s struggles with learning. Alexander disclosed his TBI in
order to access accommodations. Ethan sometimes felt forced to disclose if instructors
were having trouble understanding why he should have accommodations. He also
disclosed if asked. Logan disclosed to his instructors so they would understand his
difficulties. Jacob however rarely disclosed his injury; he did not want instructors to
know that much about him.
According to Briel et al. (2007) faculty may have “negative or prejudicial
attitudes towards individuals with disabilities” (p. 25). Students may not choose to selfidentify as having a disability to avoid that possible attitude. There is a social stigma to
“being identified as ‘disabled’ and the burden of explaining this to others and coping with
their over-solicitous or invalidating responses, while simultaneously requiring the ‘label’
to obtain needed support services” is difficult (Cloute et al., 2008, p. 652). The difficulty
with disclosure that several of the co-researchers encountered was reflected in the
Good Teacher
Five of the co-researchers had experiences with “good teachers”. Alexander,
Ethan, Jacob, Logan, and Emma described experiences with instructors where they felt
appreciated and cared about. For Ethan and Alexander this was someone who showed
personal concern; not just concern about schoolwork. Logan found these experiences
were rare. They all described the importance of this connection with the instructor.
What the co-researchers were describing was social capital, “connections among
individuals…the social networks, norms of reciprocity and trustworthiness that arise from
them” (Flaherty, 2008, p. 142). There was little information found in the TBI literature
regarding this experience for the co-researchers.
Two of the co-researchers described the support they had in learning. Emma and
Alexander both had found someone in their community who supported their efforts and
Emma had some support from her son.
Ruoff (2001) suggested to students with TBI “over time, you may find a favorite
professor-someone who inspires you, supports, and challenges you as you make your way
through postsecondary education…” (p. 12). There was little information found in the
TBI literature that reflected the experiences of the co-researchers regarding this theme.
Domestic Violence
Two of the co-researchers, both the women, disclosed having been victims of
domestic violence. One attributed her brain injury directly to this violence.
Jackson et al. (2004) demonstrated a significant number of battered women show
the effects of TBI. There was information in the literature regarding TBI as a result of
domestic violence, but no research was found investigating the possibility of undisclosed
violence in students with a history of TBI.
The major theme of emotions seemed to stand alone as an essence with its subthemes of frustration and anger, depression, loss, anxiety, and happiness.
Frustration and Anger
Frustration and anger were common emotions felt by the co-researchers when
they perceived they were being misunderstood, not respected or under-valued. Ethan
found that after the injury his anger would erupt more easily. He described the frustration
of having a ‘hidden disability’ and finding instructors who did not understand. Both
Ethan and Alexander have felt frustration and anger in class from not being understood or
valued; however, Ethan verbalized his frustration and Alexander usually would not.
Alexander had sought counseling for his anger issues. Olivia, Ethan, and Logan have
both experienced the frustration and anger of being humiliated in class by the instructor.
Olivia remembered not being able to sit through an entire class when she first started
college due to agitation, but had counselors who helped her gain that skill. Logan
described the frustration of asking for help from an instructor and not getting it. He also
described the frustration with believing he should be able to understand what was going
on in class, but he could not. Both Alexander and Emma described frustration and anger
that occurred outside the classroom, but was school related. Alexander had trouble using
the copy machine and Emma described difficulty in meeting with her disabilities
counselor and the resultant lower grades due to inability to obtain accommodations.
Emma also described the frustration of not being able to remember what she had read, her
short-term memory loss problems.
Ruoff (2001) described the difficulty students with TBI have in dealing with
others who could not understand why they were struggling when no disability seemed to
be apparent. Briel et al. (2007) described how faculty may struggle with accommodating
students simply because they do not understand the students needs or are not familiar
with the services provided by the DRC. She also described the struggle college students
with TBI have with the stress of the demands of higher education.
In research to conceptually map problems associated with TBI, Donnelly et al.,
(2005) described participants as more easily angered and having a lowered frustration
tolerance. The CDC (2006) listed irritability as one of the behavior changes possible with
brain injury. Damage to the frontal lobe “typically results in episodic emotional
dyscontrol” including “episodic hyperirritability and angry and aggressive outbursts”
(Lucas & Addeo, 2006, p. 373). The anger, frustration and depression TBI students
experience may not always be precipitated by actual brain damage, but may a reaction to
the change in abilities from the injury (Trudel et al., 2009).
In her qualitative research regarding college students with disabilities, Goode
(2007) described instances of instructors identifying student’s disabilities in front of the
class. She also described the concept of “battling the system” (p. 44), that is the
emotional work needed to access their rights on a continual basis. Some students became
fatigued and just did not have the energy to “do battle” (p. 44), and some students became
“battle hardened” (p. 44) and could more easily demand their rights. This seemed to be a
consistent theme with the co-researchers. Frustration and anger was a common theme of
research in the TBI literature, as it was a common theme for the co-researchers, including
investigating the relationship of these emotions with physical aspects of TBI.
Depression was another emotion that Emma and Alexander felt that affected their
ability to learn. Emma found herself overwhelmed with homework with resultant deep
depression. Alexander found his depression so debilitating that he sought medical help
and took medication.
The combined demands of both socialization and academia have been shown to
be stressful for students with TBI and depression is one outcome (Ruoff, 2001). Donnelly
et al., (2005) found depression and cognitive deficits exaggerated by depression in their
research regarding TBI. The CDC (2006) listed depression as one of the behavioral
changes found in TBI. “Depression and diminished life satisfaction among survivors of
TBI are persistent problems” (Underhill et al., 2003, p. 973). A common theme in the
literature was depression, which was reflected in the experiences of the co-researchers.
Carpenito-Moyet (2008) described chronic sorrow as: “The state in which a
person experiences…permanent sadness, variable in intensity, in response to…the
ongoing losses of normality” (p. 635). The co-researchers in this study experienced a
self-awareness of losses of mental abilities, social skills and physical abilities. This kind
of loss can lead to a severe, although often insidious state of chronic sorrow, which can
also lead to increasing isolation (Roos, 2002). Trudel et al. (2009) described problems in
motor coordination post-TBI. The literature did reflect the experience of having loss and
being changed after a TBI, the experience of these co-researchers.
Ethan, Emma, and Olivia all described dealing with anxiety. Ethan and Olivia
found coping mechanisms: Ethan carried a notebook to take notes of what was happening
during the day and Olivia used her laptop to email others about her feelings. Emma
described spending many hours a day worrying about homework rather than doing it, and
described how the anxiety kept her from taking certain classes.
Anxiety and cognitive deficits exaggerated by anxiety were found in research
regarding TBI effects by Donnelly et al., (2005), and the CDC (2006) listed anxiety as
one of the behavioral changes found in TBI. “Depression and anxiety disorders are the
most common psychiatric sequelae of severe TBI” (Larson et al., 2009, p. 433). Riggio
and Wong (2009) estimated new diagnoses of anxiety occurring in 24% of people after
TBI. The literature reflected anxiety as a problem with TBI, as was reflected in the
experiences of some co-researchers.
Four of the co-researchers described the happiness they felt in their college
learning experience. Jacob described the happiness associated with accomplishing
something successfully that he had started and the happiness of improvement. Ethan also
described the happiness of accomplishment, his impending graduation. Emma and Logan
described the happiness found in the process of learning. Alexander described the
happiness of developing something that was appreciated by and useful to others.
Haag (2009) found similar happy responses in her qualitative research exploring
the experiences of university students coping with an acquired or traumatic brain injury.
There was very little research found in the literature around the concept of happiness in
the TBI experience.
With the analysis of the findings in this research many themes were identified in
which there is little discussion in the literature. These included new skills, spirituality,
online learning, time studying, reading, computers, transportation, school load, good
teacher, support, domestic violence and happiness. New skills referred to abilities the
students believed they now had, that they didn’t have before. It was unclear whether they
simply didn’t remember having those skills, or if they truly had developed new skills. It
was also unclear if the brain injury somehow contributed to the new skills. There was
very little literature regarding spiritual experiences related to brain injury, although Jill
Bolte Taylor (2008) gave a personal description of her spiritual experiences while
sustaining a stroke. The one co-researcher with an experience with this found this to be
an isolating aspect of her brain injury.
Online learning with brain injury was another theme for which little information
was found. The co-researchers did not like online learning, yet it would seem with the
built in organization usually found in online learning classes this could be a good way for
someone with a brain injury to learn. For the co-researchers the problem seemed to be
related more to the lack of personal contact. This theme intersects with the themes of
good teacher and support. Several of the co-researchers found they learned best from
teachers they connected personally with, a form of social capital. They also found
support outside of the classroom, someone who again they connected with and who
showed a personal interest in their lives. Little information was found in the literature
regarding good teachers and support in this way, although there is literature on the
concept of social capital.
There was no information found in the literature regarding the negative impact of
the amount of time several of the co-researchers found they had to spend studying. This
theme intersects with the theme of school load; the more time spent studying means
fewer classes could be taken. Since financial aid is based on a student’s full or part-time
status, the inability to carry a full load could decrease the number of financial aid
opportunities available to these students. Taking less than a full load would also increase
the length of time it takes to complete a degree, another common finding with the coresearchers. Again, if financial aid were limited to a certain time frame, these students
would be negatively affected. The theme of transportation also intersects with school load
in that for some of the co-researchers, the energy involved in getting to school
contributed to fatigue, which also negatively affected the energy available for study and
learning. The themes of time studying, reading and memory also intersect. Several of the
co-researchers had difficulty remembering what they had read, which increased the
amount of time it took to read material. The theme of reading also intersects with the
theme of computers; two of the co-researchers found it easier to read from a computer
than a paper text. There is also an intersection between the themes of computers and
socialization. Several of the co-researchers used the computer to communicate with
others, another way to increase their social capital. There was little information in the
literature regarding the effects of brain injury on reading skills.
Finally, although there is research and information in the literature regarding
accommodations, all of the co-researchers had difficulty in using accommodations in
some way. Several of the co-researchers found it difficult in getting a note-taker, and
some of them also had teachers who were reluctant to honor their accommodation
requests. The present accommodation system in these schools is designed to require
initiation and self-awareness on the part student’s with disabilities, a documented
problem for students with brain injury. All of the co-researchers described some form of
having to fight this system.
The literature discussed the reduced self-awareness of limitations in people with a
history of TBI and yet several of the co-researchers seemed to have a fairly good grasp of
their limitations. They struggled with how to cope with them, but they were cognizant
they were there. These same co-researchers described having become more
compassionate, specifically about others with disabilities due to this self-awareness. They
wanted to be a part of this research in part to hopefully help others in the same situation.
There is also discussion in the literature about lack of self-control, or impulsive behavior,
and yet two of the co-researchers did not seem to have that issue. These two coresearchers also had very slow and deliberate speech, which may have helped with that
Limitations of the Study
Limitations of this study included small sample size, lack of generalizability,
researcher inexperience, subjective data and a heterogeneous sample. Since data was
gathered from only six co-researchers, a criticism of this study is small sample size.
Patton (2002) described the difference between qualitative and quantitative research as
the difference between breadth and depth. Qualitative research by design has a smaller
sample due to the goal of greater depth of knowledge regarding the question. It would
become problematic in terms of the amount of data with a large sample size. The six
participants provided a rich, detailed description of the experience studied which
addressed the research question.
The results of this study are not generalizable because the co-researchers’ stories
reflect their individual lived experiences. The purpose of this study was to first
understand each of the co-researcher’s experiences and ultimately uncover the themes
common among them. With this small sample, it is possible that the experiences of these
six individuals do not represent the larger population of college students with a history of
traumatic brain injury. These results are not meant to be generalized, but can stimulate
further questions and discussions regarding this experience.
The researcher’s inexperience with this research methodology was a limitation.
The researcher took steps to remain as true to the theory behind the methodology as
possible. This included journaling about her thoughts and experiences regarding the
phenomenon. The researcher also began self-awareness therapy and continued to meet
weekly in a group during the period of the research. The researcher also extensively
searched the literature regarding the methodology and read examples of studies using the
methodology. One problem found early on in data collection could be attributed to
researcher inexperience. Initially the researcher planned to recruit from one community
college and one university. She became aware that she would not be able to recruit
enough co-researchers for the research; and had to add recruitment sites as the research
The data obtained in this research method is subjective. The co-researchers
control what information they wish to share with the researcher and may even share
erroneous information. Impairment in memory and self-awareness are common problems
in TBI, and much of the information the co-researchers shared was from memories
regarding their perception of their experience. It is doubtful any erroneous information
was provided purposefully as the co-researchers volunteered to share the information and
appeared very excited to have someone hear their story.
A final limitation to this study was the heterogeneous population of the sample.
College students with a history of TBI can generally be classified in one of three ways:
“those who were injured as children or adolescents and enter college as freshmen;
students injured while attending college; and adults who cannot return to their pre-injury
work and need to retool or switch careers” (Kennedy et al., 2008, p. 511). The coresearchers in this study represented all of those groups. There were four male and two
female co-researchers. Ideally, this study would have investigated the lived experiences
of just one of these groups. However, in recruiting co-researchers this did not prove
Recommendations for Further Research
One recommendation would be to repeat this research with other college students
with a history of TBI, preferably with more homogenous groups. It would be informative
to research the differences and similarities in the experiences of students from community
colleges, private colleges and universities. It would also be informative to see if there
were differences in experiences between rural and urban college students. The females in
this experience had some uniquely different experiences than the males and that could be
another area to research. Another recommendation would be to investigate the number of
female college students with a history of domestic violence and possible symptoms of
TBI. Conversely, how many women with TBI have experienced undisclosed domestic
violence? Linkages among the essences identified in this research could be explored. For
example, what are the linkages in the non-TBI population regarding self-esteem, social
capital, depression and domestic violence? How does this compare with the TBI
The counselors in the DRC and faculty also play a part in this experience. It
would be informative to investigate their experiences in working with college students
with TBI. This research may help to illuminate some of the negative experiences the
students had with faculty, and why they seemed to have such difficulty accessing
Another recommendation would be to track how many college students with a
history of TBI drop from college and why. What kinds of interventions could be
implemented to increase their success? Conversely, another group to research are those
graduate students with a history of TBI. Particularly those who experienced the TBI
during college or prior, and yet have been successful in moving into graduate school. It
would be interesting to explore the lives of those with TBI who do believe they have a
good quality of life and are happy, to see what may contribute to this. Research into the
near-death experiences of survivors of traumatic brain injury would also be informative.
Finally, a recommendation would be to explore the experiences of college students with
an acquired brain injury not related to TBI. How are their experiences similar or different
to students with TBI?
Applications to Practice
The results of this research would be helpful for prospective college students with
a history of TBI and their families, to understand some of the possible experiences they
may encounter and to help normalize what will most likely be a much longer college
experience than someone without a TBI. The results of this research would also be
helpful for counselors working with these students to help them understand some of the
problems these students are experiencing even with accommodations.
This research study provided rich, detailed information about the learning
experiences of college students with a history traumatic brain injury. The information
obtained in this study is both moving and unique and will add to the body of knowledge
in the field of secondary education and traumatic brain injury. Although there are
limitations to this research, it has generated new data and provided guidance for possible
future research. Most importantly, it has given a voice to co-researchers who have not
had that voice.
The experiences of the co-researchers have validated many of the sequelae of TBI
found in the literature review. However, there were new findings, regarding which, sparse
if any information was found in the literature. There is much to still be uncovered in this
experience. The research method of phenomenology proved to be the appropriate
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(Co-researchers will receive a spiral bound notebook for writing responses.)
This journal may be completed in several ways. You may respond to all the
questions at one time, or you may choose to answer them over the next ten days. You
may answer in a written form or tape your answers. The purpose for this is not how you
respond, but to give me some insight into what learning is like for you in college.
Your responses have no right or wrong answers. I am interested in understanding
what thoughts, feelings, expressions or anything else that seems to express the answer
best to you. These are your experiences and I want to try to understand them.
1. Describe your traumatic brain injury experience. What do you remember?
What was it like for you?
2. What is your favorite subject? Why?
3. Do you notice a difference in learning of any type between before your injury
and after your injury? Please describe.
4. Do you have or have you had a favorite instructor? Why is/was he/she your
favorite? Do you have or have you had a least favorite instructor? Why is/was he/she
your least favorite?
5. How much time do you spend on an average day working on schoolwork? Do
you think it is an appropriate amount of time? If not, why not?
6. Do you think you have any problems with learning? If so, can you describe
them? How do you feel when you are learning?
7. When do you find learning the easiest? When do you find it the most difficult?
Can you describe the difference? What helps you learn?
8. Describe the last time you experienced a strong emotion while in a learning
setting; whether that was very angry, sad, frustrated, happy, etc.
9. If you could design your own place of learning what would it look like and
who would want to come?
10. Do you think you learn differently than other people? How would you
describe that difference if you do?
11. Is learning in college different from other learning experiences you have had
in your life? If so, how?
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