Adjustment of adults with traumatic brain injury : a qualitative inquiry


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Adjustment of adults with traumatic brain injury : a qualitative inquiry
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vii, 221 leaves : ; 29 cm.
Scharf-Locasio, Alice Diane
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Thesis (Ph. D.)--University of Florida, 2001.
Includes bibliographical references (leaves 210-220).
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by Alice Diane Scharf-Locasio.

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I would like to acknowledge all survivors of traumatic brain injury who

courageously embrace the challenges of adjustment and survival. I thank in

particular the participants in this study--Teresa Lynn, Bernie, Taz, Lex, and

Shelley--who provided much valuable information and inspiration for me to

continue this study.

I am indebted to many friends and family members who provided

encouragement and faith to help me persevere through this process. To my

husband, Paul, gratitude in return for being so giving and supportive is not

enough. To Shannon, my daughter-to-be, someday I will thank you for giving me

the incentive and drive to complete this project.

I am also indebted to those who have taught me so much and served on

my committee. I appreciate the guidance and support of Mary Howard-Hamilton,

Rob Sherman, and Ron Spitznagel in conceptualizing and developing; and I

thank them for supporting me through this project. I also appreciate Harry

Daniels for agreeing to be a part of this project late in the process and Peter

Sherrard for helping me to keep my focus.




ACKNOW LEDG M ENTS .................................................... ........................... ii

ABSTRACT ............................................................................................... vi


1 INTRO DUCTIO N ...........................................................................1

Statem ent of the Problem ..................................................................... 3
Purpose of the Study...............................................................................
Definition of Term s ........................................ ............ ...................... 8
Sum m ary ................................................................................. .......... 10

2 REVIEW O F LITERATURE ..................................................................12

Disability ................................................................... .............. ....12
Psychosocial Adjustm ent to Disability .................................................. 20
Rehabilitation....................................................................................... 40
Policies and Legislation ........................................................................ 44
Traum atic Brain Injury ................................................................ .. 53
Sum m ary .......................................................................................... .. 71

3 M ETHO DO LO GY ............................................................................... 73

Research Q uestions.......................................................................... 75
Purpose ............................................................................................. . 77
Problem ............................................................................................. . 80
Research Design................................................................................ 82
Participants......................................................................................... 83
Data Collection and Analysis.............................................................. 85
Sum m ary ............................................................................................ 87

4 CASE STUDIES AND CO NTRUCTS ................................................... 89

Case Study 1: Teresa Lynn.................................................... ........... 90
Case Study 2: Bernie......................................................................... 97
Case Study 3: Taz...................................................... ........ .......... 102


C ase Study 4: Lex ................................. .......................................... 109
Case Study 5: Shelley ....................................................................... 114
Themes and Categories of Participants............................................... 120
C onstructs of Participants.................................................................... 147
S um m ary ....................... ........................... ...................................... 152

M O D E LS ........................................................................................ 154

Psychosocial Adaptation to Disability .............................................. 154
Psychosocial Adaptation to Disability Model and the Constructs ........ 156
Em pow erm ent M odel................................................................ ........ 160
The Empowerment Model and the Constructs ................................... 162
Prigatano's Holistic Model of Neuropsychological Rehabilitation ........ 165
Holistic Model of Rehabilitation and the Constructs .......................... 167
S um m ary .................................... .......................................... .......... 169

6 D IS C U S S IO N ...................................................................................... 171

Introduction................................. .................. ................................ 171
R eview of R esults................................................................................ 171
L im itatio ns ........................................................................................... 17 9
Im p licatio ns ......................................................................................... 180
Theoretical Considerations............................................................... 184
Recommendations ............................................................................. 192


A INTERVIEW QUESTIONS ................................................................ 195

B FEEDBACK FORM 1...................................................................196

C FEEDBACK FORM 2.......................................................................... 197

D INFORMED CONSENT........... ............................................................. 198

E INVITATION TO PARTICIPATE........................................................202


G EMPOWERMENT MODEL................................................................205


I CONSTRUCTS AND MODELS.......................................................... 209


REFERENCES ...................................................................................... 210

BIOGRAPHICAL SKETCH ......................................................................... 221


Abstract of Dissertation Presented to the Graduate School
Of the University of Florida in Partial Fulfillment of the
Requirements of the Degree of Doctor of Philosophy



Alice Diane Scharf-Locascio

August 2001

Chairperson: Mary Howard-Hamilton, Ed.D.
Major Department: Counselor Education

The literature in traumatic brain injury rehabilitation has grown

substantially over the past 25 years as survival rates have dramatically increased

due to advancements in neuro-surgical medicine. The bulk of this literature

addresses various psychosocial problems from the perspectives of those who

treat and support the survivors of traumatic brain injury. In addition, extensive

literature exists attempting to present relationships and predict rehabilitation

outcomes for survivors of traumatic brain injury. In recent years, conceptualizing

the meaning of disability has shifted from viewing deficits as being intrinsic within

the individual to viewing the deficits as being environmental. Further,

rehabilitation ethics mandate a consumerism approach, one that includes the

client goals in treatment planning exercises. Achieving compliance with these

shifts in rehabilitation necessitates that rehabilitation professionals understand

adjustment of survivors of traumatic brain injury phenomenologically.


This study examined adjustment and rehabilitation from the perspectives

of adult survivors of traumatic brain injury. Qualitative case study techniques

were used to ascertain the viewpoints of three males and two females about their

adjustment to traumatic brain injury. Participation criteria for this study included

that the individuals had to be between 20 and 50 years old; they must have

incurred a traumatic brain injury; they must have participated in rehabilitation;

and they must have been aware of their adjustment issues for participation in this

study. The data were collected by interviewing and audio-recording the five

participants and then the information was transcribed. From the transcriptions,

case studies were constructed and then analyzed using the constant

comparative method to determine themes and constructs to satisfy the first

purpose of this study. The derived constructs were compared and contrasted

with three theories of adjustment to disability and traumatic brain injury to satisfy

the second purpose of this study. Finally, the implications from this study and

recommendations for future research were presented.



Possibilities are more important than what already exists,
and knowledge of the latter counts only in its bearing upon
(Dewey, 1959, p. 119)

Though the above quote was meant for applications in education

philosophy, it also applies to rehabilitation philosophy. The quote by Dewey is

introduced as a means to encourage readers to accept the possibility that

individuals who become brain injured might achieve far more than expected of

them and more than was predicted for them after becoming injured. The reality

of this happening may challenge traditional paradigms that serve to guide

rehabilitation and medical personnel in providing optimum care for patients

and clients. These paradigms may unintentionally preclude client potential by

imposing confining and limiting parameters.

Rehabilitation personnel are charged with facilitating attainment of

treatment goals of individuals with an acquired disability. Ideally, clients give

their input and proceed through a rehabilitation program with targeted goals

outlined by the rehabilitation team to completion and satisfaction. In reality,

treatment goals are most often pre-established and aligned with existing

philosophies and paradigms that are then adjusted and implemented in

compliance with funding sources. Rehabilitation staff and personnel are



trained accordingly, providing guidelines and expectations for patients and

families. Should clients decide upon goals that do not "fit" the philosophies

and theories endorsed by the treatment paradigm, the patient is viewed as

noncompliant, unaware, or in denial (Hill, 1999). As such, competing realities

exist. One reality is that of the survivors who are recipients of and experts on

the transpired trauma, as they experienced everything first-hand. The polar

reality is that of the observers (Crisp, 1993; Wright, 1983; Yuker, 1994). The

observers are all others including family and rehabilitation treatment providers

as they experienced second-hand the sequella of the imposed tragedy or

accident (Crisp, 1993; Wright, 1983).

The shock of trauma, sudden illness, or accident affects survivors in

such a way that they need the help of observers such as rescue and medical

professionals in order to survive the acute stages (Livneh & Antonak, 1997). At

this point, survivors or observers of the accident communicate their version of

events. As helping professionals acquire this information, they begin forming a

reality of what happened to the victims in order to assess, diagnose, and

deliver services deemed appropriate for the survivor (Rubin & Roessler, 1995).

Millions of individuals acquire various illnesses and disabilities every

year according to Social Security Administration (19998) statistics. These

millions of individuals have their personal developments disrupted by the

acquired illness and disability. They are forced to incorporate into their

inevitably continuing development the impact of their new disabilities in

accordance with financial constraints imposed by funding sources such as


insurance plans, government assistance, or client resources (Prigatano,

1999). Individuals with acquired disabilities are presented with consequential

choices of avenues to pursue in efforts to adjust to the new disability.

Committing to these choices and life goals inadvertently defines different

aspects of a developing identity (Erikson, 1963, 1982; McAdams, 1993).

Likewise, the rehabilitation philosophy adopted and implemented by

rehabilitation specialists influences the decisions made by survivors and their

families (Olkin, 1999; Prigatano,1999).

Shaping identity is significant enough without incorporating the variable

of an incurred disability. Self-concept is no longer appropriate without including

the new parameters introduced by a disability (Deloach, 1981, 1994). This is

because the individual with an incurred moderate to severe disability is unable

to function day-to-day without acknowledging limitations and changes (Livneh &

Antonak, 1997; Olkin, 1999). Thus, the process of rehabilitation begins in order

to assist survivors with adapting to the changes caused by the incurred

handicap or disability (Olkin, 1999).

Statement of the Problem

Current rehabilitation counseling trends claim to use an active

consumer/survivor approach to developing treatment plans and goals, with the

rationale being that treatment objectives are better achieved with maximum

consumer/survivor involvement. Maximizing client involvement in treatment

planning leads to increased satisfaction for the client/consumer (McAlees &

Menz, 1992). This seems to be little more than an ideal as a recent study by


Chan, Shaw, McMahon, Koch, and Strauser (1997) showed that practitioners

discount the consumers' opinions for several reasons. The survivor of incurred

disability is viewed by the helping professional as naive about prognosis,

incapable of understanding the diagnosis, or is unable to use clear judgment

in goal planning post-injury (Chan et al., 1997). If this is true, then practitioners

merely espouse the principles of maximum consumer involvement but do not

practice it, thereby reaching an ethical dilemma.

Recent philosophies regarding people with disabilities and society

endorse the premise that the environment and nondisabled people impose the

handicaps encountered in interactions between person and environment

(Gilson & Depoy, 2000). People with disabilities are viewed as capable of

achieving goals and activities daily and as intrinsically capable though they may

achieve their goals in nontraditional or unorthodox manners (Gilson & Depoy,

2000; Oliver, 1996). Ironically, many rehabilitation programs, as stated

previously, espouse this philosophy while in reality perpetuating oppressive

measures (Olkin, 1999).

At high risk for viewing clients as incapable of fully grasping the scope of

their disabilities are rehabilitation programs for traumatic brain injury treatment.

Traumatic brain injury is acquired damage to the brain due to blunt insult to the

head caused by acceleration or deceleration impact (Krauss & McArthur, 1999).

The effects of the damage range from mild to severe for survivors causing

complications and deficits across the span of foundational domains such as

cognition, personality, behaviors, and physical capabilities (Krauss & McArthur,

1999; Prigatano, 1999). Because the extent and combination of affected

domains is different for each survivor, the rehabilitation team faces unique

challenges. Because this disability group has far-reaching neurobehavioral

and cognitive implications, interpreting differences between client and

treatment goals is easily dismissed as lacking insight, awareness, or clutching

to denial (Hill, 1999; Prigatano, 1999).

Measures such as the Glasgow Coma Scale (1974) implemented to

categorize and predict outcomes for survivors with traumatic brain injury as

mild, moderate, or severe seem to take into account physical variables in acute

phases of injury. Positive correlations have been found between predictions

and outcomes for survivors that indicate that such instruments are reliable

(Krauss & McArthur, 1999). Other studies suggest little or no relationship

between predictions and outcomes that should raise serious questions of

validity to rehabilitation providers (Krauss & McArthur, 1999).

Several researchers suggest that problems exist when predictions and

prognoses take place out of context (Hill, 1999; Livneh & Antonak, 1997;

Prigatano, 1999). To explore or even predict behavior out of context runs the

risk of limiting the individual to the parameters of the outside observers. Only

the survivor is expert on fully understanding the challenge(s) of adapting to an

imposed disability. Endeavoring to learn these challenges

phenomenologically is critical in rehabilitation planning (Prigatano, 1999).

Understanding the client perspectives is paramount as it is the only way to

maximize consumer/survivor involvement and to best facilitate restoration to


optimal functioning (Prigatano, 1999). Learning what adaptation means within

the context of individual situations and then to try to understand the

complexities of human behavior must occur phenomenologically. Practitioners

must incorporate a whole, qualitative understanding of client problems in the

client environment or context in order to optimally facilitate clients toward

reasonable goals.

Therefore, the problem is that current positivist, medicine, and

rehabilitation philosophies fail to explain how and why people with traumatic

brain injury exceed prognoses and predictions made with nominal measures

and scales. Also unexplained adequately are the numbers of patients deemed

unaware or naive because they do not comply with recommended treatments.

This presents the possibility that said rehabilitation philosophies are not

adapted to allow for these variances to fall within normal realms. Rather, such

individuals are labeled as anomalies, unaware, or in denial of their

circumstances. To explore this phenomenon quantitatively would explain

matters only in terms of quantity and would not answer the questions of how

and why individuals with severe traumatic brain injuries at times exceed

expectations and prognoses or do not comply. Such questions can be

answered only by exploring the constructs offered by the actual survivor of

traumatic brain injury. In doing so, problems imposed by rehabilitation

programs implementing prescriptive goals upon clients in addition to the

problems of client awareness, denial, and naivete are likely to be addressed.


Purpose of the Study

The purpose of this study was to obtain descriptions from survivors of

traumatic brain injury about their perceptions of adjusting to disability and then

to compare the perspectives with existing disability theories and practices.

Because research in brain injury rehabilitation is newer than other disability

groups, there is not an abundance of literature that presents relevant issues

from the client perspective. In addition, there is scarce literature in brain injury

research that examines neurobehavioral and psychosocial constructs thereby

revealing the youth of brain injury research (Olkin, 1999; Prigatano, 1999).

Trauma to the brain potentially affects foundational domains of an individual

including cognition personality, intelligence, and physical functioning. The term

rehabilitation for this disability group may be a misnomer because an injury

affecting these facets of identity concurrently may require the individual to

habilitate (Hill, 1999). Traditional rehabilitation therapy that endeavors to return

individuals to optimal functioning may be inappropriate when the survivor may

need to start all over again, not merely return to a previous state. It is difficult to

argue that a person who suffers from personality changes can return to being

the same person (Hill, 1999). The only way to determine the needs of the client

and the course of disability treatment planning is to endeavor to understand

what the client currently perceives as the rehabilitation treatment course to

follow (Prigatano, 1999). This means examining the current context of the client

and de-emphasizing the process of restoring patients to a state of functioning

that may be impossible due to the imposed deficits of traumatic brain injury.


Therefore, the first purpose was to examine through inquiries of actual

survivors what it means to inquire and adjust to traumatic brain injury. Second,

the constructs uncovered through qualitative, semi-structured interviews were

compared and contrasted with three existing models of disability and brain

injury rehabilitation.

Definition of Terms

Rehabilitation. Rehabilitation is a restorative process that strives to

return an injured individual to optimum functioning and maximize the potential

for independent living (Rubin & Roessler, 1995). Attempts are made to restore

an individual to independent functioning after acquisition of an injury or illness

in an effort to achieve independent living. A person who has become disabled

or handicapped builds upon premorbid, preexisting information while

incorporating the imposed disability into this knowledge base. This process

comprises the rehabilitation that ideally develops strategies to overcome

societal and self-imposed obstacles (Maki & Riggar, 1997).

Habilitation. Individuals, whether disabled or not, spend their initial

years building a repertoire of knowledge, attitudes, behaviors, and

experiences. The individual participates in a learning process and foundation-

building process known as habilitation (Maki & Riggar, 1997; Wright, 1983).

This foundational knowledge is used as a reference point during rehabilitation

treatment planning (Wright, 1983).

Traumatic Brain Injury. For the purposes of this study, traumatic brain

injury was viewed purely as blunt trauma to the head causing damage to the

brain tissue. Closed head injury was used synonymously while head injuries

were delineated as any injury to the head or face not having neurological

consequence, necessarily (Krauss & McArthur, 1999).

Morbid. For the purposes of this research, morbidity connotes the

incidence of disability or traumatic brain injury. Premorbid connotes conditions

that existed for individuals before acquisition of disability and postmorbid refers

to conditions existing after the acquisition of disability.

Adjustment. Some authors maintain that adjustment and adaptation are

separate. Livneh and Antonak (1997) view adjustment as a subset of

adaptation in that adjustment is the final phase of the adaptation process

connoting acceptance and acclimation to disability. This author adopted this

definition and used the model presented by Livneh and Antonak titled "

Adaptation to Disability" but focused on the constructs presented in the

adjustment phase of the model during the comparison analysis of this


Self-Concept and Identity. For the purpose of this study, identity is

defined as a combination or cluster of experiences which one incorporates

within oneself to form a conceptual whole or complete self image (Rangell,


Awareness. Awareness means to have insight and knowledge of one's

conditions and surroundings and to be conscious. To have deficits in these

areas so that one is not conscious, alert, or knowledgeable of one's conditions


and surroundings connotes a condition known as anosognosia (McKinlay &

Watkiss, 1999).


This study explored problems that arise in adjusting to traumatic brain

injury for the individuals who incur them. A traumatic brain injury results in

acute and permanent neurological damage to the central nervous system

affecting foundational domains such as personality, cognition, and emotion

(Krauss & McArthur, 1999). Medical and rehabilitation efforts collaborate in

order to assist individuals who acquire traumatic brain injury to recover and

compensate for deficits in order to return to an optimal state of independent

functioning. As Hill (1999) pointed out, however, it is unreasonable to expect

someone whose personality or emotions have changed to return to a previous

state. Further, patients with traumatic brain injury can be easily dismissed as

being unaware, in denial, or noncompliant should they choose goals aside

from those recommended by rehabilitation professionals. This study

examined these problems by inquiring how actual survivors of traumatic brain

injury perceive and pursue adjustment. Interviews were conducted with

survivors from which case studies were developed along with an analysis of

derived themes and constructs. The uncovered themes and constructs then

were compared with existing brain injury rehabilitation paradigms.

In doing so, several assumptions were made. One assumption was

that individuals who acquire traumatic brain injury adopt an adjustment

process. Second, participants in this study were survivors of traumatic brain

injury who had undergone formal rehabilitation of some type. Third, the

participants answered researcher questions in an honest manner. Fourth, the

data obtained on each participant were independent of data obtained on other

participants. Finally, all participants were aware and cognizant of their

participation in this study, each having consented to participating independent

of coercion or persuasion by the author or family members regardless of

whether the traumatic brain injury was categorized as mild, moderate, or


Chapter 2 reviews the literature in several categories including disability,

adjustment, history and legislation regarding disabilities, rehabilitation,

traumatic brain injury, and traumatic brain injury rehabilitation. Chapter 3

outlines the methodology used to collect and analyze the data while the

following chapters present the findings and discuss the results and

implications of this study. Chapters 4 and 5 present the results, and Chapter 6

discusses the findings and recommendations.


In order to explore adjustment to traumatic brain injury from the survivor's

perspective, it is important to have an understanding of the pertinent literature.

A review of the literature is presented, describing adjustment issues relevant to

disability, rehabilitation, and traumatic brain injury as follows: (1) disability, (2)

theories of psychosocial adjustment to disability, (3) rehabilitation, (4) policies

and legislation regarding people with disabilities, (5) traumatic brain injury, and

(6) models of adjustment to traumatic brain injury.


Disability Defined

A disability is a congenital or acquired physical, mental, or emotional

condition that detours the achievement of daily objectives (Rubin & Roessler,

1995). Congenital disabilities are those conditions that are present at birth

such as mental retardation or physical deformities. Acquired disabilities are

those that are incurred through illness or accident, sometime throughout the

lifespan. Since disabilities and handicaps are not synonymous, disability is

distinguished from a handicap. A disability is a limitation of functioning on

some level of organ or body system but does not obstruct task

accomplishments such as activities of daily living. With a disability, the manner



in which the task is normally accomplished may change, but the task is still

achieved (Rubin & Roessler, 1995; Wright, 1983). Conversely, a handicap is

an environmental obstruction that prevents normal accomplishment of

vocational, social, educational, or recreational objectives (Gilson & Depoy,

2000; Rubin & Roessler, 1995; Wright, 1983).

Olkin (1999) stated that a wide variety of different types of disabilities

exists and can be viewed in terms of severity on a scale from least severe to

most severe. For example, nearsightedness may fall on the least severe, left

side of the scale while traumatic brain injury falls toward the more severe right

side of the scale. Separately, disability can be observed in terms of a health

continuum according to Olkin (1999). On the left end, less severe illnesses

occur such as colds and other minor ailments. Toward the right end of the

scale are those illnesses that are life threatening such as Duchenne muscular

dystrophy because this disease affects involuntary muscles such as the lungs

or heart (Livneh & Antonak, 1997). It is possible to have a serious disability

and yet be extremely healthy. For instance, people with mental retardation,

cerebral palsy, or amputees may exhibit excellent health, while others with

serious disabilities may exhibit debilitating secondary symptoms (Olkin, 1999).

Secondary symptoms or illnesses are conditions caused not by the disability

itself but rather by the results of the disability. For instance, muscular

dystrophy, comas, and spinal chord injuries, among others, cause limited

mobility that leads to a variety of potential death-causing illnesses such as

debulcutis ulcers, pneumonia, and urinary track infections. Generally, however,


disabilities are regarded in terms of function, or the degree that one is able to

achieve the day-to-day activities known as activities of daily living (ADL)(Livneh

& Antonak, 1997; Olkin, 1999).

Inconsistencies exist across contexts and professions when defining

disability. The degree of function, stigma, and illness are interchangeably

pitted against each other, often spurring countless legal battles across the

country (Olkin, 1999; Rubin & Roessler, 1995). For example, obesity, height,

and learning disabilities entail legal ambiguity that yields inconsistent disability

decisions (Olkin, 1999). The Rehabilitation Act of 1973 and the Americans with

Disabilities Act of 1990 have been credited with prompting the continuous "fine-

tuning" of the definition of disability. The Americans with Disabilities Act of

1990 defines disability as follows:

The term "disability" means, with respect to an individual any
physical or mental impairment that substantially limits one or more of
the major life activities of such individual such as caring for oneself and
performing manual tasks, walking, seeing, hearing, speaking, breathing,
learning, or working. The individual must have a record of such
impairment and must be regarded as having such impairment. (ADA,
1990, p. 12111)

This definition focuses on the degree of function that qualifies or

disqualifies an individual with a disability. A more poignant perspective is to

ask when people with disabilities consider themselves to be disabled (Livneh

& Antonak, 1997; Maki & Riggar; 1997; Olkin, 1999). Olkin (1999) identified

three disability identity groups that people with disabilities gravitate toward.

The first of these, called the "functional limitations group," may accept benefits

such as handicapped parking, but reject seeing themselves as disabled


(Olkin, 1999). These individuals interact with the non-disabled community and

are accepted and treated as "normal," especially if their disabilities are not too

severe or carry little stigma (Olkin, 1999). Because of being treated as normal,

there is little motivation to examine identity as anything other than normal, yet

these individuals admit a "kinship" to those who are disabled (Olkin, 1999;

Wright, 1983).

A second disability group that people with disabilities tend to identify with

is the "Disability Identity Group" (Olkin, 1999). These individuals have integrated

their disability with their self-concepts. Such individuals try to function in society

as normally as possible but may recognize that they need assistance from

those who are "able-bodied" (AB) (Deloach, 1981; Olkin, 1999). A third

disability identity, a group called the "Civil Rights Group," is a subset of the

second, "Disability Identity Group." This group takes a proactive approach,

having already incorporated their disability into identity. They see disability as a

social construct. These individuals view the disabled community as a minority

group that has been suppressed and actively advocates for them (Olkin, 1999).

Along with severity of disability and severity of residual effects of the

disability, two other factors determine how people with disabilities identify

themselves, including etiology of disability and degree of financial and social

dependence (Rubin & Roessler, 1995; Wright, 1983). The acquisition of a

disabling condition disrupts what would have been a normal development

process. The impact of incurring disability can have overwhelming effects on

the psychological, social, vocational, economic, and physical facets of daily


functioning. Congenital disability necessitates that caregivers teach a

normative process so that the individual with a handicap at birth may one day

achieve independent living. Children with congenital disabilities learn to

incorporate the effects of their disabilities or handicaps during formative years

by their experiences with caregivers. These guardians tend either to coddle too

much, thereby fostering a dependent personality; or the guardians teach their

children to ignore the disability (Olkin,1999). Other parents take steps to

educate and provide support for the ongoing socialization process for their

children with special conditions.

Disability and Identity

The precise meaning of identity has no consensus among theorists and

scholars. Numerous theories exist that endeavor to explain identity, each

presenting the elements of identity through different paradigms. The term has

appeared to be an enigma to the scientific world, as only certain aspects are

quantifiable (Kegan, 1982). The recent trend in psychology is positivist and

attempts to quantify data in order to disprove a hypothesis according to Kegan

(1982). This, however, may be the cause of other aspects of identity to be

overlooked and be left undefined. Defining identity may be a qualitative

process (Kegan, 1982; McAdams, 1993). Identity is shaped by context(s) and

experiences with certain components remaining unchanged as one

encounters changes and transformations (Rangell, 1994).

Many times people see themselves relevant to the people and things in

their lives, thereby defining themselves in a context (Kegan, 1982). It is


important to understand that a single definition of identity that is applicable to

all contexts is nonexistent (Kegan, 1982). However, the present study partially

focused upon individual self-concepts and differences perceived before a

disability versus after a disability as influenced by their rehabilitation

processes. For the purpose of this study, identity is defined as a combination

or cluster of experiences which one incorporates within oneself to form a

conceptual whole or complete self image within one's current context (Rangell,


Disability and Stigmatization

Adventitious disability necessitates that clients learn or relearn to

accomplish goals and daily tasks using residual capabilities (Rubin &

Roessler, 1995; Wright, 1983). After acquiring a disability or handicap due to

accident or illness, normal developmental processes are disrupted. As this

happens, the individual with the incurred disability begins an interchange with

the environment that shapes subsequent psychosocial development. How

people see themselves with their respective disabilities is affected by self-

appraisal and societal stigma. A stigma refers to the appraisal that society

gives to phenomena such as race, religion, sexual preference, disease, and

disability (Deloach, 1994; Livneh & Antonak, 1997; Olkin, 1999). Should the

individual belong to the same groups that most of the population belong to,

then the individual is generally accepted as being "normal" and nonstigmatized

(DeLoach, 1994; Olkin, 1999). However, should the individual possess traits

that deviate from what is considered and accepted as normal, the "normal"


population regards such individuals as different. Consequently, people with

disabilities elicit a variety of anxieties from the nondisabled population from pity

and apathy to avoidance and disdain (DeLoach, 1994; Olkin, 1999; Shontz,


The degree of stigmatization appears to be related to both the context in

which the disabled and nondisabled interact and the nature of the disabling

condition (DeLoach, 1994; Olkin, 1990). A study conducted by Sigelman,

Howell, Cornell, and Cutright (1991) produced findings that people without

disabilities are less likely to consider intimate relationships with people with

any sort of disability or difference. The public seems to be more willing to

consider friendships or work relationships with people with disabilities and

differences (Sigelman et al., 1991). Olkin (1999) found that the public tends to

be more accepting of certain disabilities such as cancer, blindness, or

paraplegia than it is of other disabilities such as drug addiction or AIDS. The

latter disabilities were viewed as controllable and evoked feelings of anger and

blame, whereas the former disabilities evoked sentiments of low responsibility

(Olkin, 1999). The impact of the polar values of independence and humanity is

great on those with disabilities and handicaps. Our culture places a high value

on being independent financially and socially (Rubin & Roessler, 1995).

Although this past century did witness the introduction of policies and

legislature that attempted to create equal access and opportunity for minority

groups, the sentiment of being self-supportive overshadowed efforts that

fostered human interests. In a society such as the United States where


personal responsibility and independence are valued, negative public opinion

and perception toward those with abnormalities carries a price. People with

disabilities are left to interpret and incorporate their environment's opinions

about them as the process of adjustment.

Current Disability Models

One model of disability conceptualization is the medical model of

disability. The medical model views disability as a "permanent biological

impediment causing those with disabilities to be less capable than those

without disabilities (Gilson & Depoy, 2000). This paradigm sees the problem

to be addressed by rehabilitation services as within the individual (Gilson &

Depoy, 2000). The medical model encompasses the premises of

rehabilitation. As such, rehabilitation professionals endeavor to restore

individuals with disabilities and foster recovery to a state of desirable

functionality (Gilson & Depoy, 2000).

The social model of disability sees individuals with disabilities not as in

need of restoration or repair but as individuals who add to the diversity of the

human condition (Gilson & Depoy, 2000). This philosophy sets goals of

removing environmental and social barriers, as the problem exists within the

social context and not within the individual with disability. While the shift toward

this paradigm exists, it still competes with the medical model in rehabilitation

contexts (Hill, 1999; Oliver, 1996).

The political model of disability indicates that it is a barrier preventing

people from working. As such, the focus is on people with disabilities and their


ability to make economic contributions to society, thereby setting up an

interesting paradox. People with disabilities hold power as a group because of

legislation that defines them, but because value is placed upon economic

contribution, the societal stigma of people with disabilities being less capable

of contributing is perpetuated (Crisp, 2000; Gilson & Depoy, 2000).

Finally, the multicultural model sees individuals with disabilities as a

group that is not bound by the lists of symptoms within their diagnoses but as a

group inclusive within itself because of the societal and political circumstances

forced upon them (Crisp, 2000; Gilson & Depoy, 2000). One underlying theme

that can be derived from all of these models is that people with disabilities are

"under-positioned" socially and politically. In the endeavor to facilitate

adjustment to a disability, the presentation and awareness of these models

lends to a better understanding as to why acceptance of a disability can be a

difficult undertaking (Crisp, 2000; Gilson & Depoy, 2000).

Psychosocial Adjustment to Disability

Adjustment to a disability in American society is often erroneously

perceived as the individual achieving normalization, functioning independently

with the majority of society (Perrin & Nirje, 1985; Rubin & Roessler, 1995). One

common misconception in our society is that of success and normalization

equated with independence. Dependence of any type is viewed negatively,

perpetuated by media and entertainment icons. Self-made individuals are

upheld and praised for being independent from familial and governmental

support (Rubin & Roessler, 1995). In our society, the word "disability" connotes


neediness and incompetence, and those with disabilities are seen as needing

support and services. Therefore, it becomes easy for those with disabilities to

be perceived negatively (Fine & Asch, 1988). The message is evident that

dependency is not valued in our society; hence, public perception devalues

those with disabilities. Paradoxically, those who are independent and self-

made are supported at one time with either or both family and government

support. Further, even those who are perceived as successful may have

trouble in areas such as housekeeping, shopping, and managing finances

and therefore may seek assistance (Rubin & Roessler, 1995).

For people with disability, survival becomes a process of assimilating

information from the environment, including devaluation and residual

capabilities into psychosocial adjustment and eventually adaptation. As the

nondisabled public perceives people with disabilities as less valuable, those

who are afflicted with disability absorb and either reject or accept the

devaluation into self-concept (Rubin & Roessler, 1995; Wright, 1983).

Residual capabilities are those abilities that are unaffected within the individual

with incurred disability, whereas the affected domains are those that are

disabled (Livneh & Antonak, 1997). While the focus was upon incorporating

disability into self-concept, past models of adjustment to disability used the

terms "adjustment" and "adaptation" to disability interchangeably such as the

conceptual models proposed by Wright (1983), Vash (1981), and Shontz (1975,



A traumatic disability is usually the result of an accident or sudden

illness causing changes the ability to function in one or several domains and/or

appearance (Livneh & Antonak, 1997). While many theories exist speculating

the psychosocial recovery of the individual, it is agreed that the impact of a

traumatic disability has psychological implications for the individual (Livneh &

Antonak, 1997). One of the earlier attempts to conceptualize adjustment to

disability was presented by Dembo, Leviton, and Wright (1956) as a coping

framework. The coping framework listed characteristics that foster adjustment

of an individual with disability. These characteristics included emphasis on

residual capabilities, being proactive with shaping one's life, acknowledging

personal accomplishments, managing negative experiences, minimizing

environmental limitations, and participating in avocational or vocational

activities (Dembo, Leviton, & Wright, 1956, 1975; Livneh & Antonak, 1997). This

coping framework was opposite of a succumbing framework or mindset.

Those who succumbed to the effects of a disability rather than trying to

minimize the effects were viewed as succumbing.

Earlier Adjustment Paradigms

Wright (1983) expanded these writings and suggested that acceptance

or adjustment is the ability to minimize perceived or actual loss while retaining

value of residual capabilities (Livneh & Antonak, 1997). The difference between

perceived and actual loss is the same as the disabled individual's

interpretation of the lost functions versus what is actually lost (Livneh &

Antonak, 1997; Wright, 1983). Because the acceptance of a disability involves


the victim's interpretation, Wright equates psychosocial adjustment with

acceptance versus denial of the incurred disability (Wright, 1983). She

proposed four changes that the individual must make in order to limit self-

depreciation and maximize adjustment. These changes include identifying

values unaffected by disability, minimizing the importance of physical

appearance, confining the effects of disability to only the affected areas, and

transitioning values from being externally based to internally based (Livneh &

Antonak, 1997; Wright, 1983).

Shontz (1989) supported a form of qualitative inquiry that allowed the

researcher to examine experiences from the perspectives of survivor. Shontz's

"personology" approach used representative case studies to observe the

perceptions of people pertaining to their choices, experiences, motivation,

conflicts, and possibilities rather than environmental causalities (Shontz,

1989). The goals of personological research sought to enhance the ability of

researchers to gather data about contextual considerations, facilitate

understanding the human perspective, and develop effective ways of applying

theories to the individual rather than the masses (Shontz, 1989). In addition to

his philosophy of research with people with disabilities, Shontz offered his view

of adjustment.

Similar to Wright, he stated that adjustment was a dual process that

encompassed, first, the abilities of people to maximize environmental

opportunities and, second, the environment providing accommodations.

Shontz (1975) stated that adjustment was the last stage of a reaction process


to incurring a disability that is congruent with the subjective perception of the

external environment. He suggested that adjustment is optimized when the

environment and the subjective realities of people or compatible. As the

environment and individual accommodate and acclimate to one another, then

adaptation is achieved (Shontz, 1975, 1989). Last, Shontz maintained that the

best consultants when researching rehabilitation issues are those who

actually have experienced the targeted malady first hand, dubbed the "insiders"

by Beatrice Wright in 1983 (Gordon & Shontz, 1990; Wright, 1983). All

individuals who observe the victim of acquired disability, whether they are a part

of the treatment team, the family support system, or virtual strangers, are

"outsiders." These individuals are all a part of the environment providing

feedback and impressions, intentionally or unintentionally, to insiders, thereby

affecting adjustment (Dembo, Leviton, & Wright, 1975; Wright, 1983).

Vash (1981) conceptualized the process of adjusting to a disability as

normal reactions to abnormal stimuli. Vash (1981) stated that the normal

reaction is the psychological process of acclimating to an injury, while the

accident or illness itself is the abnormal stimuli. She seemed to readily accept

the reaction of the individual as unconditionally normal, while the environment

is not always accepting of those reactions. While Vash, Shontz, and Wright

differed in how they conceptualized adjustment to disability, they all agreed that

a variety of factors affect adjusting to illness or injury. Existing before the

disability was acquired, these identified factors influence adjustment

processes after illness or disability is incurred. According to Vash, these


determinants fall into three categories: external factors such as the

environment, the type and severity of disability, and internal factors such

personality and self-concept (Livneh & Antonak, 1997; Schlossberg, 1981;

Vash, 1981; Wright, 1983).

As an individual acquires a disabling illness or condition and reacts to it,

the environment provides feedback to the reactions in two ways. First,

sentiment toward handicaps and disabilities is reflected by the construction

and implementation of concrete, physical objects (Vash, 1981). For instance,

adjustments are made to the physical environment by inserting elevators and

ramps when stairs are impassable or by developing a relay hearing service

when telephone use is impeded. These environmental adjustments are

concrete and static, representing the paradoxical attitudes of normalized

society. Hence, culture and environment have a large role and responsibility in

defining disabilities and attitudes toward them (Vash, 1981; Wright, 1983).

Those physical objects designed to enhance accessibility were designed and

implemented by engineers and architects who shaped and therefore defined

an environment (Vash, 1981; Wright, 1983).

A second type of environmental feedback comes from people and their

attitudes. These attitudes are influenced by societal values and customs

interwoven with attempts to reverse the underlying tone of rejection or

nonacceptance toward those who are different (Olkin, 1999; Vash, 1981). Vash

attributed these attitudinal barriers to several factors including over-evaluation

of physique, under-evaluation of spirituality, societal tendency of blaming the


victim, and assuming that mourning the loss of function has to take place

(Vash, 1981).

Another determinant affecting psychosocial functioning is the nature of

the injury or disability. The type of disability seems to influence the perceptions

of the survivor and the public. For instance, auto-immune deficiency syndrome

(AIDS) carries a more negative stigma than pancreatitis, both of which involve

immune system malfunction (Olkin, 1999). Severity and age of occurrence and

visibility of the disability affect rehabilitation treatment planning, as well as

public perception (Livneh & Antonak, 1997; Olkin, 1999; Vash, 1981). Those

who look different or abnormal generally are believed to be more handicapped

than those with invisible disabilities (Livneh & Antonak, 1997; Shontz, 1985;

Wright, 1983).

For those facing terminal illness, rehabilitation objectives include getting

affairs in order, grief and bereavement counseling for family members,

lessening the demands of vocational activities, and focusing on avocational

activities (Livneh & Antonak, 1997). Those who incur non-life-threatening

disease or injury experience shifts in psychosocial functioning such as

changing jobs or physical activities. As the ramifications of the incurred

maladies are drastically different, so are the intrapsychological variables of the

individual. The previously mentioned variables are constant for both groups;

however, the utilization may be different. For instance, cancer patients who are

in denial about the lethality of cancer may hasten their deaths if ignored or

refused. Similarly, brain-injured patients who are in denial about their injuries


may need additional attention from rehabilitation staff and family to insure

individual safety.

Personal characteristics such as self-concept, gender, and values

inherently affect perceptions and adjustment to incurred disability (Livenh &

Antonak, 1997). Self-concept refers to how one sees oneself (Livneh, 1997;

Schlossberg, 1981; Wright, 1983; Vash, 1981). Self-concept formation begins

early in life and forms by integrating self -knowledge gained by assimilating

feedback from the environment with sensory experience and cognition.

Influenced by developmental and social learning theories, Wright (1983)

described the formation of self-concept and self-esteem as an integrative

process that continually evolves, influenced by the individual perceptions of self

and feedback from the environment. These characteristics comprise what

Wright (1983) described as the inside perspective. The effect of having been

traumatized is then affected greatly by the insider perspectives or perceived

control over the situation (Wright, 1983). Locus of control refers to how

individuals perceive their sense of control of and in the world (Rotter, 1971). An

individual with a high external locus of control believes that fate and the

environment control circumstances, which connotes that the individual is a

victim of the environment. An individual with a high internal locus of control

believes that the ability to control circumstances lies within the self (Livneh &

Antonak, 1997). The personal philosophy that the individual adopts tends to

affect adaptation to disability significantly, according to research (Livneh &

Antonak, 1997; Wright, 1983).


Many studies assess the relationship between locus of control and level

of adjustment to disability. For example, Roberta Trieschmann (1989)

investigated numerous personality traits and their relationship to positive

adjustment to spinal chord injury. She found that those individuals with a

higher internal locus of control had more positive adjustment. Levenson

(1975) expanded upon Rotter's locus of control concept and determined that

three categories exist, including internality, influence of powerful other, and

chance occurrences. The additional category accounted for those catastrophic

events that are caused by chance, such as weather catastrophes or other

accidents (Levenson, 1975).

Krause, Stanwick, and Maides (1998) conducted further research with

spinal chord injury patients to determine, among other things, the relationship

between internality or internal locus of control and adjustment, short and long

term, to the disability. The results showed that those with higher locus of

control had a favorable emotional outcome. Likewise, the results also showed

that those influenced by powerful others with higher external locus of control

had more difficulties emotionally (Krause et al., 1998). Other researchers have

examined and determined that those with higher internal locus of control tend

to take more responsibility in all aspects of having incurred a disability. These

individuals tend to self-blame or own the occurrence of disability. Likewise,

they also actively set goals and expectations of themselves in order to succeed

in achieving life goals and/or treatment goals. This is similar to a phenomenon

known as "efficacy," referring to the potential expectations and goals that a


person has for oneself (Bandura, 1977). Other adjustment theories maintain

that individuals who experience trauma and subsequent disability must

experience or do experience emotional phenomena such as depression,

anger, or denial in order to achieve adjustment and adaptation that are typically

seen in phase models (Livneh & Antonak, 1997).

The Phase Models

The phase models find roots in earlier adjustment models such as the

model for adjustment and adaptation to grief and dying introduced by Kubler-

Ross (1969). In this model, characteristics that were common in the

adjustment processes of dying patients and their families were introduced as

phases including shock, denial, anger, depression, and acceptance (Kubler-

Ross, 1969).

The phase models maintain that humans experience certain emotional

reactions to trauma and illness when adventitious disabilities occur. These

reactions include shock, anxiety, denial, depression, internalized anger,

externalized hostility, acknowledgement, and adjustment (Livneh & Antonak,

1997) (Appendix F). Studies reveal all or a combination of these phases may

be present and that the phases do not occur sequentially, necessarily (Livneh

& Antonak, 1997). For instance, Livneh and Antonak (1991) found that

reactions to disability were nonlinear, multidimensional, and hierarchical. The

results of the study showed the ordering of phases including maladaptive

reactions that blended in with the hypothesized order of adaptive reactions.

This study found relationships among the variables that varied with time. For


instance, anxiety and depression had different intensities after time passed

(Livneh & Antonak, 1991). The phase model also makes several assumptions.

For instance, permanent, significant changes and psychological dissonance

must be experienced, and the phases do not occur in sequence or in isolation

of other phases (Livneh & Antonak, 1997).

Shock is a common initial response to overwhelming physical and

psychological trauma and may be experienced physically or psychologically as

a numbing, confusing, depersonalized, or retarded state of being (Livneh &

Antonak, 1997). Anxiety is another response to trauma and is experienced as

irritability or heightened emotion after initially learning of the incurred trauma or

illness. Physiological reactions may coincide with this phase, such as rapid

pulse, breathing difficulties, or non-productive hyperactivity, for instance, that

may heighten the individual's state of shock (Livneh & Antonak, 1997).

Denial as a reaction to disability is usually seen as a coping phase or

stage experienced by an individual during the rehabilitation process. Billings

and Moos (1981) outlined a two-faceted conceptual model of coping with

denial. In facet one, the process of coping has three components. The first

component focuses on appraisal of situation and is affected by logical

analysis, cognitive redefinition, avoidance, and denial of the crisis life event

incurred. The second component focuses on problems and how to solve them

in the external sense, such as through support systems or resource availability.

The third component focuses upon the emotionality of the individual, such as

affective regulation or acceptance level. The second facet is comprised of three


components including active-cognitive, active-behavioral, and avoidance

(Billings & Moos, 1981).

Denial is controversial according to some researchers and practitioners

who view it as a phase of the recovery process after an individual has

experienced crisis. Others view denial as a distortion of reality in an effort to

alleviate anxiety. Freud (1936) believed that it operates unconsciously and

therefore is inaccessible with insight. Wright (1983) discussed denial in her

model of rehabilitation, stating that denial could be viewed or renamed as "as

if' behavior. "As if' behavior is when the individual with illness or disability acts

as if it did not exist or attempts to minimize the effects of such (Wright, 1983).

She believed that doing so is valuable because the individual is allowed to

slowly acclimate to the reality of adventitious injury or disease. Some

researchers believe that denial may be an important survival mechanism when

faced with extreme distress or anxiety elicited by crisis (Langer, 1994). While

denial may initially aid in assimilating the occurrence of disability into belief and

reality, its continuance leads to dysfunction and potential danger (Langer,

1994). The denial of a disability or illness may create danger for the individual

or others if the individual attempts to do tasks that are no longer possible due

to limitations and handicaps (Langer, 1994).

Feelings of hopelessness, despair, and grief have been observed as

common reactions to acquired disability. Other common depressive

symptoms that comprise the depression phase are self-devaluation, isolation,

despair, and helplessness that may be experienced after realizing that


permanent loss or change has taken place (Livneh & Antonak, 1997; Rodin,

Craven, & Littlefield, 1991).

Internalized anger is listed as a phase that involves self-blame and

resentment. Typically, individuals who experience this phase are in some way

responsible for the occurrence that caused disability. Suicidal ideation and

self-injurious behavior may occur during this phase as a result. For example,

Heinemann and Shontz (1984) described a case study of a male who acquired

paraplegia due to a hang-gliding accident. The young man was viewed as

extremely compliant through rehabilitation as he wished to appear to take

responsibility for the accident with no regrets but also minimized his disability.

A year later, he was re-hospitalized for a failed suicide attempt, having

experienced intense feelings of depression, hopelessness, and self-blame

(Heinemann & Shontz, 1984). Externalized anger is hostility that is directed

toward aspects of the environment, people, or objects believed to be related to

or caused the disabling condition. Examples of externalized anger are

passive-aggressive acts, abusive accusations, feelings of antagonism, and

blame directed at others (Livneh & Antonak, 1997).

In the acknowledgment phase, individuals recognize that the conditions

imposed by disability are permanent. Individuals begin to re-orient themselves

with the environment as a process of integrating old and new self-concepts

ensues (Livneh & Antonak, 1997; Olkin, 1999). Finally, adjustment refers to the

emotional and cognitive reconciliation that the acquired disabling condition is

permanent, triggering a process of re-acclimation with the environment. In this


phase, the individual who has adjusted has established a renewed sense of

self-value, carries out new vocational and social goals, recognizes new and old

potentials and talents, and overcomes obstacles in pursuit of new goals

(Livneh & Antonak, 1997).

Livneh and Antonak (1997) maintained that these phases overlap and

even occur concurrently to the extent that they suggest that the process of

adjustment and adaptation occur simultaneously (Livneh, 1986; Livneh &

Antonak, 1997). After incurring a disability, adjustments begin occurring

immediately, both consciously and unconsciously, for the patient. As this

process begins, so does a reciprocal relationship between the individual with

the environment. The individual may try through trial and error to attain daily

functioning goals while the environment gives feedback (Wright, 1983). Livneh

and Antonak's Model of Adaptation to Disability (1997) attempted to portray a

model of adaptation that is more integrative than the phase models (Livneh &

Antonak, 1997) (Appendix F).

In understanding the internal and external factors affecting psychosocial

adjustment, the age of onset of disability, the individual's internal or external

locus of control, and interactions with the surrounding environment before the

accident affect how the individual adjusts after disability has incurred. To gain

a better understanding of how individuals go through the adjustment process,

psychological theories including social learning theory and developmental

theories can be viewed in conjunction with phase models of adjustment.


Personality Theories, Psychosocial Adjustment, and Rehabilitation

The groundwork had been broken in field of psychology during the 20th

century leading to further exploration down different paths including

rehabilitation and adjustment. Theories of psychology attempted to explain and

understand personality, cognitive and emotional domains, and the experiences

affecting the perceptions and decisions of individuals. As adjustment is

acknowledged as a part of various life situations, rehabilitation could not ignore

the psychosocial ramifications of acquiring disability. In order to understand

foundational elements brain injury rehabilitation, it is worthwhile to examine

theories that help to explain elements that constitute behavior such as

cognition, emotion, and personality traits in conjunction with adjustment


There are many theories that have been generated as an attempt to

explain and understand human behavior and personality. Several have been

chosen to discuss to exemplify frameworks of understanding behavior through

qualitative inquiry and adjustment to disability. The theories focused upon in

this study are Albert Bandura's Social Learning Theory, Erik Erikson's

developmental models, and Marcia's middle adulthood developmental model.

Social Learning Theory

Albert Bandura (1986) developed a theory of learning and behavior

derived from behavioral theories such as classical conditioning and operant

conditioning. Whereas classical conditioning was concerned with responses

to conditional stimuli, operant conditioning was concerned with antecedents


and consequences of behavior. What is important to notice is that the

purposes of these approaches were concerned with stimuli external to the

individual, thereby ignoring the internal processes of the individual.

Bandura maintained that human cognition and vicarious experiences

also affect behavior and that it is the result of a triad of the environment,

behavior, and covert individual processes interacting simultaneously (Bandura,

1997). Bandura maintained that in this triad one factor is always affected by the

other two and that cognition, comprised of motivations, thought, and emotion,

act together to determine behavior, thereby outlining Social Learning Theory

(Bandura, 1997).

From Bandura's social learning theory came the term "efficacy," referring

to the perceived ability and competency to carry out desired tasks. This means

that the ability of an individual to accomplish a task is affected by the level of

belief one has in oneself to accomplish it (Bandura, 1986). This relates to

incurring a disability in that the individual sets goals based on the belief of

one's abilities or residual capacities. Residual capabilities are those

capabilities one retains or discovers following adventitious illness or disability

(Wright, 1983). For instance, after traumatic brain injury is acquired, changes

occur cognitively, emotionally, and behaviorally, caused by the unpredictable

progression of edema and hemorrhaging from the impact (Chadwick, 1985;

Cook, 1992). After the brain-injured patient becomes aware of the transpired

changes, new efficacy goals evolve.


The social stigma caused by a disability affects identity resolution

(Susman, 1994; Wright, 1983; Vash, 1981). The response by the environment

to the disability is many times negative or deviant (Strauser, 1995; Susman,

1994). Barring denial that would hamper achieving recovery goals, the

expectations of efficacy may be altered and changed by four things according to

Bandura (1986). These include performance accomplishment, vicarious

experiences, verbal persuasion, and emotional arousal (Bandura, 1977).

Performance accomplishment is simply the mastering of tasks set before the

individual. The achievement of such fosters positive expectations for further

achievement to ensue (Bandura, 1977). Vicarious experiences are the

observations of role models with similar conditions as the individual (Bandura,

1977). Once individuals observe other similar individuals accomplishing

tasks, safety and the expectancy of positive outcome become possible

(Bandura, 1977). Verbal persuasions are the suggestions and empowerment

of individuals to succeed, thereby increasing efficacy expectation (Strauser,

1995). Finally, emotional arousal, if negative, adversely affects positive efficacy

expectations and visa versa (Bandura, 1977).

Therefore, rehabilitation interventions should focus on fostering high

efficacy expectations and providing compatible interventions (Strauser, 1995).

Further, should lowered self-evaluation and lowered efficacy expectations exist,

then interventions such as group counseling and empowerment techniques

should be employed by the rehabilitation professionals involved (Strauser,



Ego Identity Developmental Theories

Erikson. Adjustment may be viewed through the developmental theories

of Erikson and Marcia upon acquiring a disability or chronic illness. Individuals

are forced to incorporate the changes brought on by the disability cognitively,

emotionally, and socially, thereby affecting the developmental process. Erik

Erikson (1963) first developed the concept of ego identity development,

believing that individuals pass through a series of stages with developmental

tasks to be accomplished in each stage. His conceptualization of how identity

forms includes a tripartite relationship among biological, psychological, and

societal processes that he developed in response to Freud's psychosexual,

developmental stages (Kroger, 1993, pp. 1-20). Erikson saw Freud's

psychosexual stages of development as limiting in that Freud focused more on

processes that happened within the individual with little emphasis upon the

reciprocal relationship between the person and environment.

Therefore, Erikson proposed a developmental model of identity d

purporting that individuals are given a set of tasks to achieve in eight

developmental stages that encompass the life span (Kroger, 1993, pp. 1-20). If

individuals accomplish the tasks within each developmental stage, then

positive attitudes toward the self and environment develop. If individuals fail to

accomplish the tasks in each stage, then potentially debilitating beliefs toward

the self and environment develop (Kroger, 1993, pp. 1-20). Last, in each stage,

the potential exists for achieving certain values by striving for positive resolution

between polar attitudes. For instance, the first stage is "basic mistrust versus


trust," occurring the first year of life during which the infant and caregiver

establish whether the world is trustworthy as the infant's needs are met

(Erikson, 1982, 1997). The value to be attained in this stage is hope (Erikson,

1982, 1997).

The second stage, ages 1 to 3 years old, is "shame and doubt versus

autonomy," during which the child attempts to master tasks and assert will.

The value to be attained at the second stage is "will" (Erikson, 1982, 1997).

The third stage is called "guilt versus initiative," where toddlers attempt to

master their bodies and the world around them. The value to be attained in the

third stage is "purpose" (Erikson, 1982, 1997). The value to be attained in the

fourth stage is "competence." During the fourth stage, "industry versus

inferiority," children learn about themselves as workers, especially related to

schoolwork and tasks. The fifth stage, "identity confusion versus identity,"

encompasses adolescent-aged youth who are trying to explore the boundaries

of themselves in relation to society. Individuals in this stage are concerned

with defining the possible and potential parameters of identity. The value to be

attained in the fifth stage is "fidelity" (Erikson, 1982, 1997).

The sixth stage is "isolation versus intimacy" during which young adults

have made commitments to identity and now seek relationships characterized

by reciprocal love and devotion. The value to be attained in this sixth stage is to

find love (Erikson, 1982, 1997). The seventh stage encompasses the middle

adult years and is characterized by a want to give or teach others for the greater

societal good. In this stage of "generativity versus stagnation," individuals carry


out their generative needs by raising children or being civically involved for

example. The value to be attained in the seventh stage is to demonstrate

caring for others. The eighth stage, "despair and disgust versus integrity,"

includes the senior years and is when individuals reflect over their lives and

decide whether their lives have been productive and worthwhile. The last value

to be obtained is wisdom (Erikson, 1982, 1997).

Marcia. James Marcia initiated research in college settings in order to

identify how young and middle adults resolve conflicts and commit to identities.

He proposed that four identity statuses exist to represent how individuals cope

with the conflicts that arise in resolving identity. These statuses, or types of

commitment, include foreclosed identity status, the identity diffuse individual,

the identity in moratorium, and individual with achieved identity. According to

Marcia (1999), individuals with foreclosed identity have not explored oneself or

relational conflicts but have made commitment to identity. Such individuals

tend to be less mature, preferring involvement stereotypical and superficial

relationships and endeavors (Marcia, 1993, 1999).

Individuals who are identity diffuse are those who have not encountered

crises and have made no commitments to identity. Such individuals have

considered different possibilities but have not engaged any particular conflict or

crisis (Marcia, 1999). Individuals with moratorium identity status have

encountered conflicts but have not made commitments to identity. Achieved

identity is the fourth ego identity status at which point individuals have

encountered crises and made commitments to identity (Marcia, 1993, 1999).


Individuals in moratorium and achieved identity status tend to be more mature

in behavior and decision making processes (Marcia, 1993, 1999). These four

statuses represent ways that adults reconcile different life crises, such as

incurring a disability and then committing to decisions. As mentioned

previously, making decisions affects and shapes development and adjustment

accordingly (Livneh & Antonak, 1997; McAdams, 1993; Wright, 1983)

The purpose of understanding and facilitating adjustment is to help

individuals achieve optimal functioning after disability is acquired. This is the

concept that encompasses rehabilitation. The issues, models, and theories

that explain the processes of adjustment to disability set forth parameters with

which to understand and plan for adjustment to occur (Maki & Riggar, 1997).


Rehabilitation Defined

Individuals, whether disabled or not, spend their initial years building a

repertoire of knowledge, attitudes, behaviors, and experiences. The individual

is participating in a learning and foundation-building process known as

"habilitation" (Maki & Riggar, 1997; Wright, 1983). This foundational knowledge

is used as a reference point during rehabilitation treatment planning for both

the individuals with incurred disability, who remember how they were before,

and the rehabilitation team (Wright, 1983). Rehabilitation focuses upon

maximizing client's levels of functional independence in order to re-assimilate

into societal roles as independently as possible (Maki & Riggar, 1997; Olkin,

1999). Therefore, rehabilitation endeavors to return individuals with


adventitious injury or illness to optimal states of functioning. Idealistically, a

team of rehabilitation professionals such as medical doctors, nurses,

occupational therapists, physical therapists, speech pathologists,

psychologists, and rehabilitation counselors works with the rehabilitation

candidates to achieve goals set by the patients in specific areas of functioning

including psychological, vocational, sociological, and physical spheres (Purtilo,

1991; Olkin, 1999). Rehabilitation team members form a collaborative,

cohesive bond to work toward client goals; however, issues may arise that

work against the morals and ethics of the team concept (Maki & Riggar, 1997;

Naji, 1975).

Rehabilitation Goals and Confounding Variables

The goal of the team is to foster patient autonomy by honoring the

desired outcomes goals of patients. By giving the client this autonomous role,

the team empowers and acknowledges that patients are the rightful and

rational owners of their destinies. The team, therefore, acts to respect patient

autonomy, upholding the beneficiance morality (Purtilo, 1991). The team holds

discussions that consider patient welfare, focusing upon the individuals'

abilities to set reasonable, achievable goals. Upon finding that the individual is

making harmful or irrational decisions, the team may decide to impose

opinions, a concept known as paternalism (Purtilo, 1991). The paternalistic

dynamic of the rehabilitation team is controversial because, when employing

paternalism, the team endeavors to maintain a standard that allows client

autonomy, known as "beneficiance." However, the team may, at times, exclude


the client or guide the client along traditional or "well-traveled" treatment plans,

thereby limiting client input and possible potential (Purtilo, 1991). Having a

rehabilitation team supposedly allows a system of checks and balances that

function to prevent diversions from the standards of "benefiance" (Purtilo,

1991). Unforeseen dynamics may influence the group such as reliance upon a

set of prescribed treatments, instead of individualizing the treatment plan. In

other words, rehabilitation professionals are prone to fall into a treatment rut

and are uncomfortable with deviations despite the fact that every client is

different. For instance, with traumatic brain injuries, assumptions that the client

lacks understanding or awareness may occur, prompting a professional to

make recommendations accordingly. Though the client may have experienced

deficits, awareness and judgment may be intact. In such instances, the

professionals believed to be acting in the best welfare of patients may be

inadvertently limiting client potentials (Purtilo, 1991).

Another negative phenomenon known to occur is for the team to "cover

for' or go along with" the weakness of a member or members of the team

(Purtilo, 1991). At this point, agendas other than facilitating clients toward their

goals are being served. Second, team members may become biased as a

consequence of either liking or disliking a patient (Purtilo, 1991). A premise of

paternalism maintains that paternalism is justifiable when it fosters patient

dignity and potential (Morrison, 1991; Purtilo, 1991). Such objectives assist

rehabilitation professionals in adhering to values existing in the autonomy-

beneficience team approach (Purtilo, 1991).


Inclusion and Consumerism

In practicing consumerism inclusion, it is vital to include the client in

treatment goal planning and in collecting data about perceptions, attitudes, and

experiences encountered during the rehabilitation process. Rehabilitation

programs regularly boast including the insider in the planning and

implementation goals and even agree that maximum involvement by the

consumer fosters optimal recovery (Chan et al., 1997). However, because of

previously mentioned cultural, attitudinal, political, and financial barriers, true

client/consumer involvement is, at times, an idealistic sentiment (McAlees &

Menz, 1992). In addition, previous studies that indicated high levels of client

satisfaction with rehabilitation treatment measured variables in a skewed

fashion (Bativia & Dejong, 1990; Heppner & Claiborn, 1989; Richard, 2000).

Bativia and Dejong (1990) conducted evaluative studies of past

quantitative studies that reported high levels of consumer satisfaction and

found that the large majority of such studies measured satisfaction as a single

construct on issues that were important to clinicians and providers rather than

the clients. Research that defined satisfaction as multi-dimensional had

higher rates of consumer dissatisfaction with rehabilitation services as

constructs were explored that mattered to the clients (Richard, 2000; Singh,

1990). Other research conducted by Crisp (2000) that found that perception

toward social stigma played a role in client satisfaction with rehabilitation.

Those that believed they were oppressed by society due to having a disability


were less satisfied with rehabilitation treatment than those who de-

emphasized their disabilities (Crisp, 2000).

In determining whether clients are satisfied with rehabilitation goals and

treatment plans, an obvious source to turn to is the client (Richard, 2000).

Rehabilitation alleges to rely heavily upon the concepts of client efficacy derived

from the teachings of Bandura (1977) who purported that individuals, given the

right conditions, strive toward their expected optimal selves and functioning

(Caeser, 1997; Richard, 2000). In remaining true to the premises and

purposes of rehabilitation to return individuals to optimal states of functioning,

expectations of the client must be observed and included (Chan et al., 1997;

Richard, 2000; Wright, 1983). In summary, the concept of inclusion begins

during implementation of rehabilitation or habilitation treatment goals.

Policies and Legislation

Ancient Policies

Historically, attitudes toward those with disabilities were unforgiving,

uncharitable, and inhumane as religions and philosophies of many early

societies prevented positive attitudes toward inhabitants with disabilities. The

disabled were those people whose functioning deviated significantly from the

majority population in the areas of intellectual functioning, physical functioning,

physical appearance, and behaviors (Covey, 1998; Rubin & Roessler, 1995).

Such individuals were shunned, ostracized, and considered liabilities by many

early societies. In some earlier and present societies, those with disabilities


were and are believed disdained by God, hence earning His wrath and

damnation (Covey, 1998; Olkin, 1999; Rubin & Roessler, 1995).

The early Greeks placed importance upon body-soul unity, connoting a

damaged soul if the body is damaged or abnormal in some manner. Eugenics

was practiced, leaving children and adults with abnormalities to be eliminated

by the elements propagating stronger, more normal individuals (Covey, 1998;

Mackelprang & Salsgiver, 1996). The Romans tolerated those with mental

disabilities in only the elite upper classes while all others were considered

burdens and were discarded, though treatment receptacles did exist (Covey,

1998; Rubin & Roessler, 1995). Perceptions of those with mental disability in

ancient and medieval were that the individual is inhabited by demons or the

devil. During the 16th century, attitudes shifted from that of the individual being

possessed by demons to the individual being sick (Covey, 1998). Through the

rise of Christianity and Catholicism to the present, the church as socially

affected public perception of people with disabilities (Covey, 1998).

Renaissance Policies

Housing for those with abnormalities began to arise as asylums in

Europe. The public was charged admission for a glance of an individual with

the disability in these asylums, ancestor to the circus (Rubin & Roessler,

1995). Conditions of the asylums were often unsanitary and treatment of the

inhabitants was less than humane (Covey, 1998; Rubin & Roessler, 1995).

Training for those with mental retardation existed in the 17th century and

documentation of teaching the deaf can also be found, marking evidence of


early forms of rehabilitation post-renaissance (Covey, 1998; Rubin & Roessler,

1995). In the 17th and 18th centuries, schools for the deaf and blind arose

indicating further efforts to create productive environments for those with certain

disabilities. This trend was a reaction to the rise of Christianity in earlier

centuries. As benevolent as such efforts were, society and Christian beliefs

still shunned those with mental and severe abnormalities. Families that had

members who were disabled tried to hide them so as not to ruin chances of

marriage for normal family members (Covey, 1998).

19th Century to Present Policies

As a result of the Social Darwinism movement in the 19th century, the

concept that self-worth correlates to the level of monetary income earned was

an engraved belief in American society (Covey, 1998; Rubin & Roessler, 1995).

The underlying philosophy was that in order to have worth in society, people

must contribute to society through work and productivity (Covey, 1998; Rubin &

Roessler, 1995). Culture in the United States placed lesser value on

contributions to society that do not earn paychecks such as childcare, home

maintenance, and home financial management, thus devaluing activities as

such. Though these were necessary and valuable services, they were viewed

as of lesser importance than contributions involving financial productivity

(Buchanan, 1990). Evidence of this sentiment was seen in public laws such

as the Smith-Fess Act of 1920 that provided rehabilitation services for those

individuals for whom there existed some vocational potential, thus eliminating

aid for those deemed unemployable (Hahn, 1987).


The perspectives represented by this sentiment presented a dilemma

for the individual with incurred disability. Either the individual adopted the

attitude of helplessness and devaluation or the opposite attitude of minimizing

the incurred deficits and maximizing goal attainment (Rubin & Roessler, 1995;

Wright, 1983). Crisp (2000) found four profiles of people with disabilities after

conducting qualitative inquiry of perceptions of rehabilitation by those with

disabilities. These profile included "battlers" who saw themselves as

unhelpable and victims of their predicaments. "Strugglers" were those who

saw their disabilities as major disruptions to life whereas "contenders" de-

emphasized or redefined their disabilities. Finally, "optimizers" acknowledged

their disabilities while de-emphasizing its impact and accommodating with the

environment (Crisp, 2000).

The purpose of having rehabilitation public policies and delivery systems

in place was to create equal access to opportunities which could maximize the

potential to achieve goals (Gilson & Depoy, 2000; Perrin & Nirje, 1985).

Though such policies reflected sentiments that sympathize with those with

disabilities, adherence to policies fostered the notion that those with

disabilities must be "normalized" into society (Crisp, 2000). This notion

suggested the more archaic thinking that individuals with disabilities are weak,

of lesser ability, or crippled that is reflected in the medical model's definition of

people with disabilities outlined by Gilson and Depoy (2000). Such thinking

was the trend at the turn of the 20th century, however.


Current laws and attitudes reflect modern beliefs and trends toward

humanism and inclusion that occurred early in the 20th century (Covey, 1998).

Rehabilitation became a recognized profession in the 20th century as a result

of concurrent changes and events such as advances in medical technologies

in institutions, industrialization, and the World Wars. During the early 20th

century war efforts, people with disabilities were hired into the work force. It

was noticed that such individuals were capable of making production rates

despite their handicaps. After World War II, mortality rates decreased as a

result of medical advances making re-assimilation into the work force for

disabled veterans necessary (Covey, 1998; Mackelprang & Salsgiver, 1996;

Zunker, 1998).

Earlier public policies such as the Smith-Hughes Act of 1917, the

Soldier's Rehabilitation Act of 1918, and the Smith-Fess Act of 1920 were

impetuses for evolving public laws and policies. The Smith-Hughes Act of

1917 provided federal dollars to match state dollars spent on vocational

education as a result of the nation's trend from ruralization toward

industrialization. The Soldier's Rehabilitation Act of 1918 was the first federal

program designated for the purpose of vocationally rehabilitating disabled

veterans. Pensions were paid to veterans disabled in any activity while in the

service dating as far back as the Revolutionary War. Vocational rehabilitation

was provided only to those deemed to be employable after receiving services

(Rubin & Roessler, 1995). The Smith-Fess Act of 1920 was the first civilian


program launched for persons with disabilities providing vocational

rehabilitation for those deemed to be employable (Rubin & Roessler, 1995).

The Vocational Rehabilitation Act Amendments of 1954 enacted by

President Eisenhower significantly increased funding for the vocational

rehabilitation movement for those with mental and physical handicaps by

creating funding for the training of rehabilitation professionals (Rubin &

Roessler, 1995, p. 33). Later, Social Security amendments and vocational

rehabilitation amendments created income for those unable to work and

assistance for those able to return to work in some capacity (Rubin & Roessler,

1995, p. 37). Other disability legislation contributed toward inclusion and

socio-political equality, including the Architectural Barriers Act of 1968 that

stated that all federally financed and constructed transportation facilities or

buildings must be accessible and useable by people with mobile, visual, and

auditory disabilities (Fleischer & Zames, 1998).

Section 504 of the Rehabilitation Act of 1973 prohibited businesses and

employers who received federal funds from discriminating on the basis of

physical or mental disabilities. This bill utilized the concepts developed in Title

IV of the 1964 Civil Rights Act that prohibited discrimination based on race,

ethnicity and religion (Fleischer & Zames, 1998; Rubin & Roessler, 1995). The

Individuals with Disabilities Education Act (IDEA) of 1975 provided that children

with disabilities receive a free, public education with the least restrictive

environment (Fleischer & Zames, 1998). The Fair Housing Act Amendments

1988 stated that discrimination against people with disabilities was prohibited


in housing sales, rentals, or financing such housing. Further, landlords were

required to make reasonable accommodations of existing premises and new

buildings must be accessible (Fleischer & Zames, 1998; West, 1991).

These laws paved the way for more recent antidiscrimination laws such

as the Americans with Disabilities Act 1990 signed by President George Bush.

The Americans With Disabilities Act (ADA) of 1990 was important legislation

created after information was gathered from three Senate hearings, 63 public

hearings, and surveys issued by Louis Harris and Associates in 1986 that

indicted multiple injustices occurring to peoples with disabilities (Rubin &

Roessler, 1995, p. 85). The ADA of 1990 opened the door wider for the

disabled to access mainstream society and ensured that enforceable

standards exist (Rubin & Roessler, 1995, p. 85). The Americans With

Disabilities Act (ADA) of 1990 addressed discrimination concerns congruent

with section 504 of the Rehabilitation Act of 1973. Section 504 of the

Rehabilitation Act of 1973 was criterion based in that it required that an

individual possess an impairment, physical or mental, causing substantial

limitations for daily life; that the impairment be documented; and that the

individual be regarded as having an impairment (Adams, 1991). From a

condensed legal perspective, the Americans with Disabilities Act of 1990

utilized the language of Section 504 of the Rehabilitation Act of 1973 defining a

disability as follows:

(1) A mental or physical impairment which substantially limits one
or more of the major life activities of that person, (2) a record of the
impairment(s), and (3) is regarded as having such an impairment.
(p. 12111)


The Americans with Disibilities Act (ADA) of 1990 prohibited

discrimination and disqualification of an individual from hire who with

reasonable accommodations could perform the tasks of the job in both the

public and private hiring sectors. It also provided for equal access to public

services and facilities causing physical barriers to be modified to enhance

accessibility. Last, it mandated that accommodations be made to enhance

access to telecommunications (Adams, 1991; Fleischer & Zames, 1998; Rubin

& Roessler, 1995; Zunker, 1998).

These more recent laws reflect changes in attitudes by people with

disabilities and the public that are reflected in the social and political models of

viewing people with disabilities. This more modern epistemology states that

disabilities are caused by the failure to remove environmental barriers, thereby

imposing obstacles and social restrictions (Crisp, 2000; Gilson & Depoy,

2000). Advocacy groups for those with disabilities strive for inclusion by

increasing awareness among businesses that making their businesses

accessible will increase revenues. However, this sentiment is opposed as

studies show that employers fear that having people with disabilities and

abnormalities in their businesses will drive consumers away (Condeluci,


Nevertheless, employers are given incentives such as tax breaks to hire

those with disabilities and are also encouraged to retrain injured employees in

order to keep their workman's compensation insurance from rising.

Employers express concerns regarding costs of special accommodations,


effect of accommodations on work schedules and fellow employees' attitudes

and concern regarding productivity levels being adversely affected (Roessler &

Sumner, 1997). The latter concerns of employers and entrepreneurs reflect

the pervasive avoidance of inclusion of people with disabilities. A more recent

study by Hernandez, Keys, and Balcazar (2000) that examined the impact of the

Americans with Disabilities Act of 1990 on employer attitudes found that overall

employers were more willing to hire people with disabilities. The study did

show that increases in employment of those with disabilities has occurred over

the last 10 years, but a significant gap exists between positive attitudes toward

hiring people with disabilities and actual hiring rates suggesting that the

positive attitudes are superficial (Hernandez et al., 2000).

While inclusion of minority populations into functional society is the goal

of policies and legislation, the attitudes of the general population still

perpetuate exclusion (Condeluci & Williams, 1997). Likewise, rehabilitation

professionals are prone to absorb, perpetuate, and impose onto clients the

paternalistic, prescriptive values brought on by exclusionist attitudes (Crisp,

2000). Achieving goals such as returning an individual to work in a modified

capacity is plausible because it relieves financial strain for insurance

companies and the government; however, it fosters the notion of admonishing

those who are unemployable (Kuehn, 1991). As people with disabilities

assume positions that contribute to society and not only taking from society, the

more likely the public will be able to change negative attitudes (Rubin &

Roessler, 1995). Rehabilitation professionals have the chance to foster


changes in both the attitude of the representative public as well as disabled

individuals aiming to assimilate with society after a disability is inflicted.

Traumatic Brain Injury


Adults with traumatic brain injury are the chosen focus for this research.

In 1985, the projected cost of lifetime care for a person with incurred traumatic

brain injury was only $85,000 per person across all levels of severity. By 1999,

advances in medical technology have improved survival rates for individuals

with severe traumatic brain injury that drove up the cost of lifetime care by as

much as four times the original projection to approximately $300,000 per

instance of severe head trauma (Kraus & McArthur, 1999). In 1995 Miller et al.

collected data from the late 1980s from worker's compensation data banks

and found that medical costs for all severe head injuries approached $300,000

per instance as cited in Kraus and McArthur (1999). It was also found that

acute medical costs for the more severe injuries approached $2.4 million

based on the 1994 research of Miller et al., as reported by Kraus and McArthur

(1999). The total cost per new instance in head injury in the United States is

$6.5 billion with the cost of the subsequent year's medical cost projected at

$13.5 billion (Kraus & McArthur, 1999).

Because of the increased survival rates of individuals with traumatic

brain injury, the rehabilitation needs also had increased dramatically,

emphasizing the need for a better understanding of traumatic brain injury and

its effects. Traumatic brain injury is acquired damage to the brain as a result of


impact from acceleration injuries such as being hit by a moving object or

deceleration injuries such as striking a stationary object while in motion

(Noble, Cobley, Laski, & Noble, 1990; Krauss & McArthur, 1999). Genetic

abnormalities occurring prenatally and perinatally, degenerative diseases such

as Alzheimer's disease, infectious diseases, tumors, and strokes are excluded

from this definition (Livneh & Antonak, 1997). The definition of traumatic brain

injury is inconsistent in the literature. Some authors use the terms "head

injury" and "traumatic brain injury" synonymously, while others use the terms

separately. Used separately, the term traumatic brain injury refers to acute

damage to the central nervous system. Head injury refers to both damage to

the central nervous system as well as other injuries lacking any neurological

sequella, such as soft tissue injuries to the face, scalp, or skull fractures

(Kraus & McArthur, 1999; Woo & Thoidis, 2000). Other terms used

synonymously in the literature include closed head injury, nonpenetrating head

injury, and blunt head trauma, but are more descriptive than the all inclusive

term, head injury, previously described (Livneh & Antonak, 1997).

Statistics show that there are certain populations that are at higher risk

for sustaining such injuries. For instance, the highest incidences of closed

head trauma are reported to be between the ages 15 and 24. Mortality rates

are highest in this age group as well. Males outnumber females at a ratio of

3.4 to 1 (Woo & Thoidis, 2000). Woo and Thoidis (2000) cited that nonwhite

minorities are at higher risk for incurring head injury. Krauss and McArthur

(1999), however, stated that measures taken by hospitals to record race or


ethic incidence of head injury vary too greatly to validly claim that any one group

sustains injuries more than another. Studies show that there are higher

numbers of head injury among lower socio-economic populations (Krauss &

McArthur, 1999; Woo & Thoidis, 2000). Motor vehicular collisions account for

50% of the incidences of head injury with falls accounting for 21% of new cases

( Woo & Thoidis, 2000). Firearm injuries account for 12% of head trauma, and

males between the ages of 25 and 34 incur such injuries at 6 times the rate of

females the same age. Sports injuries account for 10% of new cases of head

injury, and the remaining percentage falls into the category of "other" as causes

for head injury new cases (Woo & Thoidis, 2000). Finally, records show that

56% of the incidences of new head injuries show a blood alcohol level that is

positive, a factor that compounds acute medical treatment phases as

respiratory complications tend to increase (Krauss & McArthur, 1999).

The amount of literature has grown tremendously since the 1980s

regarding traumatic brain injuries relevant to mortality and morbidity. One study

noted that in the Journal of Neurosurgery between 1944 and 1974 there was a

total of two articles that related mortality and morbidity to traumatic brain injury

(Hill, 1999; Langfitt, 1978).

Strauss and Savitsky in 1934 compiled physical symptoms of closed

head injury and called the malady "post concussion syndrome" (Fabiano &

Daugherty, 1998). One of the earliest documented accounts of brain injury was

of an individual named Phineas Gage who in 1868 received a frontal lobe brain

injury. Significant in this account is that the impact of his injury was that not only


were the physical repercussions recorded but also the psychosocial sequella.

His family and friends described his personality and behaviors as being so

different that he did not seem like the same person (Hill, 1999; Stuss, Gow &

Ross Hetherington, 1992).

Primary injuries

Gage's injury was localized in that a railroad spike became lodged in his

frontal lobe. His injury was also considered to be a penetrating injury in that a

foreign object penetrated his brain matter. Examples of other penetrating

injuries are bullet wounds, along with any other foreign object that penetrates

the skull and brain tissues. These are also examples of primary injuries, those

injuries that occur immediately upon impact. Primary injuries can be focal,

such as Gage's injury, or diffuse affecting brain tissue widespread, also known

as diffuse axonal injury (Burke & Ordia, 2000; Wehman & Kreutzer, 1990).

Axons are the connecting cells in the brain that are believed to be the

transmitters of neurochemicals that ultimately result in autonomic actions, non-

autonomic actions, and behavior (Graham, 1999). Other types of focal injuries

include skull fractures, intracranial hematomas, cortical contusions,

lacerations, and penetrating wounds.

Skull fractures are associated with increased risk for brain injury,

hematoma, or cranial nerve damage but can occur without neurological

consequence. A hematoma is intracranial hemorrhaging, bleeding in the

brain, that can cause further damage due to the pressure build-up within the

enclosed casing of the skull (Burke & Ordia, 2000). This is the leading cause


of complications, coma, and death; patients may seem fine initially but later

decline due to the increasing pressure within the brain due to hemorrhaging

(Graham, 1999). Cortical contusions, bruising of the brain, are most commonly

associated with traumatic brain injuries. These contusions are more

predictable because, upon impact, the brain is thrust upon the bony

protrusions of the inside wall of the skull. Upon doing so, the brain

experiences coup and contrecoup ricochet effect inside of the skull case. Coup

injuries to the brain occur as the brain is thrust forward in the direction of the

impact. Contrecoup injuries occur to the opposite side of the brain after the

coup impact has bounced in the opposite direction (Burke & Ordia, 2000).

Secondary injuries

Secondary injuries are injuries that occur as a result of the biochemical

and physiological changes occurring within hours or days after initial impact.

Neuro-chemical and cellular changes can take place as a result of failing

autonomic systems. Keeping patients properly oxygenated is critical; too much

oxygen to the brain could result in increased blood flow and increased

hemorrhaging; however, too little oxygen could suffocate brain cells (Graham,

1999). In addition, neuro-chemical agents are released that can lead to other

secondary complications such as swelling, cell toxicity, and lesions (Burke &

Ordia, 2000). Other secondary complications include intracranial pressure

(ICP), cerebral edema (swelling of the brain), and hydrocephalus, also know as

water build up in the brain, and co-morbid injuries occurring elsewhere in the

body (Burke & Ordia, 2000).


Other factors thought to impact medical and rehabilitation outcomes for

individuals incurring traumatic brain injury are duration and level of

unconsciousness or coma, duration of amnesia before and after injury,

hypoxia, and blood alcohol level (Moore & Stambrook, 1995; Prigatano, 1999).

The initial assessment includes assessment techniques to determine the

condition of the injury victim such as level of consciousness gauged by

Glasgow Coma Scale, pupil size and response, blood pressure, and heart

rate. Additionally, a mental status examination, reflex, muscle strength, and

sensation are performed to assess neurological abnormalities, but patient

response is required and may not be available if unconscious (Ordia, 2000).

Indicators for admission to the hospital for observation include altered level of

consciousness, prolonged loss of consciousness, nausea and vomiting,

seizures, severe headaches, focal neurological signs, skull fracture, cerebral

contusion, hematoma, edema, or cerebrospinal fluid presence (Ordia, 2000).

Surgical management of intracranial hemorrhages, penetrating injuries,

and intracranial pressure may become necessary for the moderate to severe

injuries, though mild injuries are not excluded. Initial treatments include

osmotic diuretic treatment which is the administration of agents to dehydrate

the brain, blood pressure management, elevation of the head to foster proper

fluid drainage, controlled hyperventilation to keep oxygen in the brain regulated,

temperature control, sedation to foster proper vascularization, and anti-seizure

medication. If intracranial pressure is unmanageable, then inducing a


barbituate coma is considered until ICP has been at optimal levels for over 24

hours (Ordia, 2000).

Scales Used to Categorize Brain Injury Severity

The Glasgow Coma Scale (1974) is widely used to measure levels of

unconsciousness or coma that indicate the severity of brain injury. This scale

assesses patient response to verbal commands, motor movement

commands, and responses with eyes (Table 1).

Another measurement used to categorize, then predict neurological and

neurobehavioral outcomes after incurring traumatic brain injury is the Ranchos

Los Amigos Scale of Cognitive Functioning. The Rancho Los Amigos Scale of

Cognitive Functioning categorizes behavioral responses used in the Glasgow

Coma Scale on a total of eight levels (Table 2).

Another scale commonly used to anticipate severity of injury measures

the duration of amnesia following injury, known as post-traumatic amnesia.

Another type of amnesia is the loss of memory of events prior to an accident

known as retrograde amnesia (McKinlay & Watkiss, 1999). The following

criteria are use to categorize the severity of injury (Table 3).

The impact of traumatic brain injury (TBI) can range from mild deficits to

severe deficits causing symptomatic problems cognitively, behaviorally, or

physically. Some deficits may remain permanent while others may go through

a spontaneous recovery (Prigatano, 1999). The above-mentioned scales are

common tools used to categorize the severity of injury and positive correlations

have been documented between the levels of coma, duration of amnesia with


Table 1

Glasgow Coma Scale

Patient's Response Score

Eye opening

Eyes open spontaneously 4
Eyes open when spoken to 3
Eyes open to painful stimulation 2
Eyes do not open 1


Follows commands 6
Makes localizing movements to pain 5
Makes withdrawal movements to pain 4
Flexor (decorticate) posturing to pain 3
Extensor (decerebrate) posturing to pain 2
No motor response to pain 1


Oriented to place and date 5
Converses but is disoriented 4
Utters inappropriate words, not conversing 3
Makes incomprehensible nonverbal sounds 2
Not vocalizing 1


Severe Traumatic Brain Injury less than 9

Moderate Traumatic Brain Injury 9 to 12

Mild Traumatic Brain Injury greater than 12
(Teasdale & Jennett, 1974)


Table 2

Ranchos Amigos Scale of Cognitive Functioning

Level I No response Patient in a deep sleep and

Level II Generalized response Patient reacts to stimuli non-

Level III Localized response Patient reacts purposefully, but

Level IV Confused-Agitated Patient is hyperactive, cannot
process information

Level V Confused-Inappropriate Patient reacts to simple external
structure, not independently

Level VI Confused Appropriate Patient is goal directed, but
needs external direction

Level VII Automatic Appropriate Patient behaves appropriately,
but seems robot-like with
poor short term recall

Level VIII Purposeful Appropriate Patient alert, oriented, able to
integrate past and recent events
and is aware
(Nalkmus, Booth, & Kodimer, 1980)

Table 3

Measures of Duration of Amnesia

Less than 5 minutes very mild
5 to 60 minutes mild
1 to 24 hours moderate
1 to 7 days severe
1 to 4 weeks very severe
More than 4 weeks extremely severe
(McKinlay & Watkiss, 1999).


cognitive, and neurobehavioral outcomes (Krauss & McArthur, 1999; McKinlay &

Watkiss, 1999). However, as cited in Kraus and McArthur (1999), Povlishock in

1992 and Maxwell in 1993 conducted studies that showed weak or no

relationship between level of coma and duration of amnesia with outcomes.

Use of the Glasgow Coma Scale (1974) as useful as it has been is

controversial in terms of validity as a predictive instrument (Antonak, Livneh, &

Antonak, 1993; Krauss & McArthur, 1999). Other researchers question the use

of such instruments, arguing that they are relevant only to the acute physical

symptoms. Abstract constructs that make up personality cannot be anticipated

or predicted accurately at the time of injury (Crisp, 1994; Hill, 1996). Further,

recalling that 56% of neurological injuries involve victims with positive levels of

blood alcohol consumption, inebriation confounds accurate categorization of

the Glasgow Coma Scale (Krauss & McArthur, 1999; Pentland & Whittle, 1999).

In addition, complications with oxygenation causing a condition known as

hypoxia also distort accurate measurements of the severity of injury (Pentland &

Whittle, 1999). Therefore, categorization of mild, moderate, and severe seem

only relevant within the context of acute medical phases and cannot be

wholeheartedly relied upon as accurate predictors of at least neurobehavioral

and psychosocial complications.

Changes After Traumatic Brain Injury

From the period of time immediately after injury through the first year of

recovery, complications in foundational domains such as personality, cognitive,

physical, and psychosocial aspects of individual with traumatic brain injury can


be affected (Livneh & Antonak, 1997; Antonak et al., 1993). Because this

particular disability has the propensity to impact each survivor in so many ways,

determining and predicting rehabilitation needs has proved to be challenging.

Assessment techniques used to determine deficits and residual capabilities

include neurological examinations, psychiatric examinations,

neuropsychological examinations, as well as assessments administered by a

variety of specialized therapists such as speech pathologist, occupational

therapists, physical therapists, and vocational rehabilitation counselors. After

appropriate assessments have been administered, the team of treatment

professionals together with the survivor and family members construct short-

term and long-term goals. Examples of common cognitive deficits include

short-term memory loss, long-term memory loss, attention deficits, slowed

executive function, and lowered intellectual functioning (McKinlay & Watkiss,


The treatment team works concordantly to improve deficits with cognitive

retraining techniques known as cognitive remediation that has consisted of

standard exercises designated by test scores, seldom tailored to the client

context (McKinlay & Watkiss, 1999). Physical, functional, recreational,

emotional, and vocational difficulties are also addressed through an array of

services provided by the rehabilitation team including orthopedic doctors,

neurologists, physical therapists, occupational therapists, speech

pathologists, psychologists, counselors, and vocational counselors (Prigatano,



Brain Injury Rehabilitation Challenges and Limitations

Because of the unpredictable nature of traumatic brain injury and its

overlapping sequella, it has been difficult to measure the breadth of issues for

each individual through positivist inquiry (Livneh & Antonak, 1997). To do so

imposes serious limitations to growth and recovery potential. The most useful

manner of attempting to understand the victims' perceptions of acquiring brain

injury is adherence to understanding survivors' reality of events

phenomenologically (Prigatano, 1999). Factors recognized as significant in

determining psychosocial outcome for TBI survivors include pre- and post-

injury education, personality, social network, cultural, financial, TBI sequella,

resources, medical care, and treatment team. Antonak et al. (1993) noted that

emphasis needs to be placed upon psychosocial sequella subsequent to

brain injury as this has more significant impact upon social relationships and

therefore is a better predictor than the physical sequella. Hill (1999) noted that

literature documenting traumatic brain injury from a psychosocial perspective is

scarce, especially from the perspective of survivors. Longevity studies tend to

focus upon a span of 3 to 5 years post-injury, and Hill (1999) contended that

this is not long enough to make accurate predictions.

Significant deficits exist in the knowledge base of psychosocial

adaptation to traumatic brain injury because of problems with using

appropriate research methodologies. Selecting the most appropriate research

design is problematic because defining variables has been difficult. Variables

become defined from data collections of which the majority are retrospective


interviews and symptom checklists from family members, rehabilitation

providers, and sometimes consumers (Livneh & Antonak, 1997; Antonak,

Livneh, & Antonak, 1993; Bergland & Thomas, 1991). Prigatano and

associates conducted a search from 1985 through 1995 of research that

looked for research titles that reflected brain dysfunction concurrently with the

constructs of frustration and confusion. Out of 7,600 articles found involving

traumatic brain injury, only 14 reflected these or similar emotions (Prigatano,

1999). One ethnographic study of 21 moderately injured survivors of closed

head injury notes the loss of identity and sense of self that were determined

through semi-structured interviews and observations and the coping

mechanisms the survivors used to redefine their new identities (Krefting,

1989). Another qualitative study examined and interpreted the themes that

emerged in terms of personality types that represent different levels of having

coped with and adjusted to the changes incurred after traumatic brain injury

(Crisp, 2000). Examining these changes qualitatively is, perhaps, the most

valid method for facilitating the process of discovering a new self (Hill, 1999;

Prigatano, 1999).

One of the most challenging aspects for helping professionals in

working with brain-injured populations is to determine whether or not their

client's judgment is clear. In working with populations with disabilities and

brain-injured populations, sometimes clients set unrealistic goals for

themselves after a disability is incurred. Clients either experience a lack of

understanding of the extent of acquired disabilities or they are experiencing


denial. The rehabilitation professional is faced with the task of ascertaining the

client's decision-making capabilities. This has serious implications as the

professional also has to ascertain the client's potential to improve decision-

making skills if the patient does seem to exhibit unrealistic expectations.

Should the professional determine that the client cannot set realistic goals

because of the cognitive damage, then goals must be set for that person

(Prigatano, 1999). However, should clients demonstrate potential to do so,

then rehabilitation professionals must empower and allow clients to pursue

desired goals (O'Hara & Harrell, 1990).

The problem is that this is not always easily determined. Should

rehabilitation professionals determine goals for individuals that possessed the

capacity to do so, then such counselors have not served their clients. Instead,

the basic rights of the client have been ignored and devalued. This has

serious ethical implications. Therefore, it is imperative that the client's

subjective reality be understood, respected, and upheld. To do this,

assessments and testing are available to ascertain levels of cognitive and

emotional functioning and potential. It is also vital to see through the client's

eyes and endeavor to understand phenomenologically from the insider's

perspective (Prigano, 1999; Wright, 1983).

Models of Brain Injury Rehabilitation

In examining the philosophies of current traumatic brain injury

rehabilitation theory, two trends that appear to be dominant throughout the


literature are one that is "community-based" and one that is "systems-based"

(Dahmer et al., 1993; Ragnarsson, Thomas, & Zasler, 1993).

The systems-based treatment modality is predominantly inpatient and

medically based as it is designed to treat acute stages of moderate to severe

injuries. This model usually takes place at a facility where a combination of

services is implemented including medical care, psychiatric services,

counseling, occupational therapy, physical therapy, speech pathology,

vocational counseling, and recreational therapy. Once the patient achieves

criteria set by the rehabilitation team for a reasonable level of functional

independence, the patient begins a transition to the home environment with the

family. From here patients participate in day treatment until discharge is

determined appropriate by the team. Financial resources as well as the patient

support system usually impact determination of patient discharge to the home.

With some facilities, case managers follow the case and "check in" on the

client and aid in facilitating transition. Ultimately, it is up to the client to transfer

the skills acquired at the facility to home (Brain Injury Association, 2000).

Community-based programs implement treatment in settings other than

medical facilities. Once patients are deemed medically stable, they can

participate in specialized therapies within their homes working in occupational

therapy, physical therapy, speech pathology, counseling, and vocational

counseling. Such services are designed to facilitate the survivors in

transitioning from dependence to independence within their communities.

Another example of a community-based program is that of a supported


community program that provides a place of residence to assist with

transitioning toward community re-entry (Brain Injury Association, 2000).

While there are numerous traumatic brain injury rehabilitation treatment

programs, this literature review focused upon models in the literature that

foster survivor efficacy and empowerment with an attempted understanding of

the perspective of the survivor. Three such models were examined including

Livneh and Antonak's (1997) Psychosocial Adaptation to Disability phase

model, O'Hara and Harrell's (1990) Empowerment Model, and Prigatano's

(1999) "Principles for treating individuals with traumatic brain injury" cognitive-

based model.

Psychosocial Adaptation to Disability

Livneh and Antonak (1997) developed a conceptual model of adaptation

to disability (Appendix F). Adjustment is viewed as a subset of and last stage of

adaptation, whereas adaptation is the continuous evolvement through which an

individual with acquired illness or disability achieves maximal independence

within the environment. Adjustment is differentiated from adaptation in that it is

the final phase in the adaptation process enveloping acceptance of disability

and assimilation of pre-injury psychological components and post-injury

psychological components.

There are four classes of adjustment and adaptation according to Livneh

and Antonak (1997). In Class I variables deal with the disability characteristics

such as age, extent of injury, type of injury, degree of neurological impairment,

and lethality. Class II variables contain socio-demographic information


including gender, ethnicity, developmental stage, education, marital status, and

job title. Personality attributes make up Class III variables and include values,

self-image, premorbid psychosocial adaptation, attitudes, locus of control, and

defense mechanisms. Class IV variables include socio-environmental factors

such as home environment, social groups, friends, and attitudinal barriers

imposed upon the client (Livneh & Antonak, 1997).

These four classes of variables impact each stage of progression while

adjusting and adapting to disability. These stages of progression include an

early stage that involves shock, anxiety, and denial of the trauma. Intermediate

states focus upon steps toward acceptance of the incurred trauma and include

anger and depression. The later stages move the survivor acceptance and

adjustment. A circular sequence accounts for different reactions and decisions

regarding the trauma at any given point during the process eliminating the

model from being a linear stage model entirely (Livneh & Antonak, 1997).

Empowerment Model

The Empowerment Rehabilitation Model (Appendix G) (O'Hara & Harrell,

1991) is unique in that a brain-injured individual may enter treatment at any

point after becoming injured. Psychotherapeutic intervention is emphasized in

order to enhance emotional adjustment, mastery of cognitive skills, and social

skills. The Empowerment Model's guiding principle maintains that all of the

foundational domains--cognitive, emotional, physical, and interpersonal--must

reintegrate at a rate chosen by the client in order to move victims to survivors

(O'Hara & Harrell, 1991).


This model embraces goals for the rehabilitation team and survivors of

traumatic brain injury in order to achieve empowerment, instilling belief in

another individual's ability to succeed. These goals include enhancing

motivation, enabling clients with information about their injury, providing

structure until the clients are able to do so on their own, teaching skills and

strategies to compensate for losses, and facilitating acceptance of differences

before injury and after injury (O'Hara & Harrell, 1991). The underlying premise

of this model is that facilitation of the above-mentioned goals leads to an

enhanced internal structure and motivation equated with empowerment for

individuals with incurred traumatic brain injury. The model is presented


+ ACCEPTANCE + SKILLS = EMPOWERMENT (O'Hara & Harrell, 1991). No

component can be eliminated or dismissed, or the goal of empowerment is

unlikely to be achieved.

Holistic Neuropsychological Rehabilitation Program

George Prigatano, a practitioner and researcher in brain injury

rehabilitation, stated that in order to facilitate clients from post-acute stages of

traumatic brain injury through adjustment and reintegration with oneself and

society, awareness and judgment need to be restored or compensated

(Prigatano, 1995, 1999). He emphasized that cognitive remediation and

restructuring, along with psychotherapy be implemented in order to enhance

adjustment to traumatic brain injury. He proposed several components for a

"Holistic Neuropsychological Rehabilitation Program" as development of a


therapeutic atmosphere and bond between treating therapist teams and client.

These included cognitive retraining, small-group cognitive retraining hour,

cognitive group therapy, individualized cognitive retraining, psychotherapy,

family involvement and education, and the protected work trial.

In pursuit of developing a therapeutic atmosphere and understanding

the perspectives of clients, Prigatano (1999) maintained that clients could

optimize therapeutic goals if confusion and frustration were reduced and trust

was established between the rehabilitation staff and client. Group therapy and

individual treatment modalities were endorsed as mechanisms to restore and

restructure cognitive functioning or to introduce strategies to compensate for

deficits (Prigatano, 1999). He introduced small-group cognitive therapy hour as

another means of implementing this concept, yet in a short, concise time frame

that holds the clients' interest (Prigatano, 1999). Family education was meant

to inform and support the immediate support systems of the clients so that

loved ones had a better understanding of how they and their loved one were

impacted. Last, supported return-to-work programs were introduced to

enhance the transition in returning to and maintaining work (Prigatano, 1999).


Adjusting to and living with traumatic brain injury is a complex journey for

the survivor as well as for those who are treating and supporting the individual.

The survivors of traumatic brain injury experience intrinsic and extrinsic

variables during the process from cognitive and emotional to sequella to social

stigma and isolation. Shifts in disability legislation have led to subsequent


shifts in disability philosophies; the environment, the outsiders, rather than the

individual with disability imposes handicaps and disabilities. Rehabilitation

philosophies have experienced similar shifts in theory, but inquiry is needed in

order to determine whether the shifts are occurring yet in practice. Quantitative

methods of ascertaining rehabilitation treatment methods have provided

limited information that is skewed by the parameters of the questionnaires and

assessments that gauge satisfaction and adjustment. Qualitative methods of

ascertaining this information provide valuable data but are scant; therefore, this

study endeavors to provide additional data for the research base in a qualitative

fashion. The following chapter discusses the qualitative methods chosen for

answering the research problem presented in this study. In this endeavor of

learning how survivors of traumatic brain injury view their adjustment and

rehabilitation interventions, two purposes are accomplished. One is that the

perceptions of survivors of traumatic brain injury is learned phenomenologically

and that accounts of the survivors may be properly constructed from the inside

view to the outside view. Second, the derived constructs from these survivors

may be compared and contrasted with existing theories of adjustment to

disability and traumatic brain injury.


The review of relevant literature lends a better understanding into what is

already known about adjustment issues in disability and brain injury

rehabilitation. The earlier writings of Beatrice Wright (1983), Carolyn Vash

(1981), and Franklin Shontz (1975) present psychosocial issues that result

from incurring a disability that lead to the more recent paradigms of

understanding the psychosocial issues of disability from social, multicultural,

and needs-based perspectives discussed by Oliver (1996), Wendell (1996),

and Brown et al. (2000). From these writings, the progression of

understanding these issues has gone from viewing disability as being an

intrinsic phenomenon within the individual that must be minimized and

reframed to viewing obstacles presented by disabilities as being strictly

environmental (Crisp, 2000). As such, one of the questions raised by this

research is how has rehabilitation fostered or impeded individuals with

traumatic brain injury in aspiring to their rehabilitation and life goals. The

literature recognized that survivors of traumatic brain injury endure neurological

sequella causing permanent changes in foundational domains such as

emotion, personality, cognition, and other physio-neurological changes.

Questions were also raised in the literature regarding the appropriateness of



imposing rehabilitation agendas upon individuals with traumatic brain injury

that expected individuals to return to a previous state of functioning.

The literature also observed and challenged the validity of using the

Glasgow Coma Scale by Teasdale and Jennett (1974) as a predictor of

outcome for rehabilitation potential because it fails to accurately address

anything but the acute physical and neurological effects of a traumatic brain

injury. It does not take into account pre-accident and post-accident emotional,

cognitive, and personality variables such as values, determination, motivation,

and preferences that play significant roles in achieving goals and efficacy.

Questions remain unanswered about outcome.

The literature contains scarce information that constructs the accounts

and perceptions of survivors of traumatic brain injury relevant to their

adjustment and rehabilitation journeys. This chapter introduces the qualitative

methods that purport to answer the questions posed in this study that positivist,

quantitative methods cannot. The reader will encounter discussions of

purpose, problems that lead to conducting this study, the research design, the

participants, the sampling process, data collection and data analysis.

Positivism, the epistemological basis for quantitative inquiry, maintains

that the external world is an objective reality that never changes and that

phenomena can be examined entirely separate from other phenomena. The

many interactions among people, the environment, and cognition are

discounted. Empirical information collected from a representative sample can

be quantified and statistically measured to provide information that is then


applied to the larger majority. The problem with this epistemology is that

phenomenon observed in static environments may not be relevant to the

individual contexts of human behavior and experience (Bogden & Biklen,1992;

Gall, Borg, & Gall, 1996; Stake, 1995). Further, quantitative methodologies are

more concerned with the relationships among phenomenon and less

concerned with its specific details. Positivism or quantitative inquiry is like

casting a net and then studying the relationships and differences among the

specimen caught. Post-positivist inquiry, the theoretical basis for qualitative

inquiry, takes into account the nuances, relationships, and particulars of an

individual's natural environment. Qualitative case study endeavors to examine

intensively a defined, bounded instance of an individual experience (Stake,

1995). Analogously, case study is the examination of just one of the specimen

caught among the haul rather than examination of relationships among the

entire haul (Runkel, 1990). The research questions posed below are

answered best by using a methodology such as case study research that

examines details in depth and within context.

Research Questions

1. What perceptions do individuals with traumatic brain injury have of their
injury and rehabilitation?

2. How do the survivors of traumatic brain injury view their adjustment?

3. How does the survivor of traumatic brain injury evaluate rehabilitation
progress and adjustment?

4. How do the perceptions of the survivors of traumatic brain injury
compare with theories of disability and traumatic brain injury


This study targeted the perspectives of people with traumatic brain injury.

The aim was to gain an understanding of the experiences of survivors during

the rehabilitation and adjustment processes. Another goal was to compare the

experiences of survivors of traumatic brain injury with existing disability and

traumatic brain injury theory. In order to meet the goals of this study, it was

necessary to include the context and its details rather than objectifying the

goals with a null hypothesis (Campbell, 1995; Gall, Borg, & Gall, 1996).

The individual milieus, consequential interactions, and the perceptions

of the participants provide germane and rich information for the researcher.

The process of collecting data from a qualitative viewpoint draws from a post-

positivist philosophy called phenomenology (Gall, Borg, & Gall, 1996).

Phenomenology is the study of understanding the participant's experiences

within context; accordingly, the researcher must interact with participants' in the

environment of the latter in order to collect data (Gall, Borg, & Gall, 1996; Stake,

1995). The post-positivist movement arose as social and behavioral

researchers realized that nullifying the context also nullifies contextual validity

and reliability.

In the 19th century Comte introduced the study of humans through

objective, scientific methods, fostering positivist thought in the study of human

behavior (Gall, Borg, & Gall, 1996). As the positivist trend developed, a few of

the students opposed its dehumanizing effects including Dilthey, Kant, and

Buber (Gall, Borg, & Gall, 1996). Under Dilthey's tutelage, Buber offered that

the research of people and human behavior must not be reduced to studying "I-


it" relationships (Campbell, 1995). Rather, the focus must be upon the "l-thou"

relationships and interactions (Campbell, 1995). Buber was saying that it is

inappropriate to objectify people and relationships as it negates the context

(Campbell, 1995; Gall & Borg, 1996). In presenting information about

qualitative inquiry, a rationale exists for the research methodology most

appropriate for this study.


This study examined two goals; one was to gain an understanding of

what it is like to incur and adjust to a traumatic brain injury. Extensive literature

describes the behaviors of clients with traumatic brain injury provided by

medical and rehabilitation staff and the family support systems. Treatment

plans and prognoses are developed based on these observations and

opinions that influence the potential rehabilitation outcomes for clients (Crisp,

1993; Prigatano, 1999). Though medical and rehabilitation teams espouse

client inclusion in rehabilitation planning, clients in this particular population

are often assumed to be lacking awareness and sustaining levels of denial.

While many victims of traumatic brain injury do suffer from awareness deficts,

not all of them do (Crisp, 1994; Livneh & Antonak, 1997; Prigatano, 1999). This

study was concerned with examining the experiences of traumatic brain injury

from the survivor's perspective because the juxtaposition of the referenced

psychosocial dynamics, awareness and denial, is often in opposition to

treatment modalities. Perhaps it is appropriate to view awareness and denial


not merely as functions of or in opposition of an overall adjustment process but

as facilitators of the process (Liveneh & Antonak, 1997).

A second purpose of this study was to compare the experiences of the

participants with existing models in brain injury and disability adjustment. In

doing so, any differences that arise between the constructs derived by the

participants and the constructs of the existing theories may address the

appropriateness of such treatment modalities. The three models that were

chosen to compare with the results of the case studies conceptualized

components of empowerment and understanding client contexts. The first

model applies to any disability population, while the last two are specific to

traumatic brain injury.

Livneh and Antonak (1997) developed a conceptual model of adaptation

to disability. They viewed adjustment to be a subset of adaptation, whereas

adaptation is the continuous evolvement and dynamic overall process through

which an individual with acquired illness or disability reaches an optimal state

of congruence with the environment. Adjustment delineates from adaptation,

according to Livneh and Antonak, in that it is the final phase in the adaptation

process encompassing acceptance and reintegration of pre-injury

psychological components and post-injury psychological components (Livneh

& Antonak, 1997). For the purpose of examining the rehabilitation processes

that embrace these components, this model is included (Appendix F). This

model depicts four classes of variables that overlap and progress circularly so


as to incorporate pre-injury and post-injury variables acclimating together to

achieve adjustment.

A second theory, the Empowerment Rehabilitation Model (O'Hara &

Harrell, 1991), maintains that all of the foundational domains--cognitive,

emotional, physical, and interpersonal--must reintegrate at the pace desired by

the client. In doing so, the rehabilitation professional facilitates movement from

victim to survivor and fosters empowerment (O'Hara & Harrell, 1991) (Appendix


The model is presented nonhierarchically as EXTERNAL STRUCTURE


(O'Hara & Harrell, 1991) (Appendix G). The theory maintains that, should a

component be eliminated or dismissed, the goal of empowerment is less likely

to be achieved.

George Prigatano (1995, 1999) offered components for a "Holistic

Neuropsychological Rehabilitation Program" as development of a therapeutic

atmosphere and bond between treating therapist teams and client, cognitive

retraining, small-group cognitive retraining hour, cognitive group therapy,

individualized cognitive retraining, psychotherapy, family involvement and

education, and the protected work trial. He maintained that awareness and

judgment need to be restored with cognitive remediation and treatment

(Prigatano (1999).



Extensive literature in traumatic brain injury rehabilitation examined the

perceptions of rehabilitation professionals and family members of survivors of

traumatic brain injury (Crisp, 1993). Beatrice Wright (1983) called these above-

named support individuals "outsiders" because they were not the actual victims

of injury or illness, but rather the observers and helpers of individuals who

survive such tragedies (Wright, 1983). The survivors of injury or illness are the

"insiders" because they possess the expertise of what it is like to incur these

disabilities (Wright, 1983). Numerous quantitative studies addressed the

effectiveness of rehabilitation strategies for this population, relying upon

methodologies that answer null hypotheses with deductive statistical

measures, generalizing the results to a larger sample of the population (Crisp,

1994; Gall, Borg, & Gall, 1996). The bulk of such studies report variables given

from the perspectives of "outsiders," rather than from the experts or "insiders"

(Hill, 1999).

Several problems exist when applying quantitative statistical measures

to determine effectiveness of rehabilitation treatment modalities. The effects of

having incurred a traumatic brain injury (TBI) are not the same for each

individual with TBI. Traumatic brain injury is defined as nonpenetrating trauma

inflicted to the cranium by being hit, shaken, or acceleration and deceleration

impact (Noble et al., 1990). Because the brain is surrounded by fluid encased

in the skull, blunt trauma causes a ricochet effect against the inside of the skull

known as coup-contra coup (Krauss & McArthur, 1999; Prigatano, 1999).


Trauma results in the brain being injured, not only at the point of impact, but

also where the brain is thrust against the inside wall of the cranium (Prigatano,

1999). Further, head position, age of onset, body position, and the force of

impact are all variables determining how the brain ricochets inside the cranium

(Krefting, 1990; Prigatano, 1999). Therefore, individuals with TBI may share the

same diagnosis but may have very different symptoms with different cognitive

domains affected (Prigatano, 1999). Generalizing results of a quantitative study

to members of the traumatic brain-injured population imposes suppositions

that may not apply to all members.

A second problem with the "blanket diagnosis" of traumatic brain injury

(TBI) is that incongruent perceptions of the symptoms may exist between

survivors and their caregivers. Caregivers are able to depict what it is like to

live with TBI survivors, and rehabilitation professionals can describe what it is

like to treat a person with TBI. Only those with TBI are able to portray accurately

what it is like to incur and adjust to life with TBI and its symptoms. Gaps

between perceptions may lead to erroneous assumptions. For instance,

because foundational domains such as cognition and personality can be

affected, rehabilitation professionals run the risk of evaluating a client with TBI

to be lacking judgment (Crisp, 1994; Prigatano, 1999). Consequently, this

assumption makes the goals of the client prone to dismissal by the

rehabilitation treatment team, resulting in an ethical conflict (Crisp, 1994;

Krefting, 1990; Prigatano, 1999).


Another problem is that adjustment is contextual, while quantitative

research is noncontextual for populations with traumatic brain injury (TBI)

(Crisp, 1993; Prigatano, 1999). The adjustment that takes place in an inpatient

rehabilitation setting may be very different from that of the client's environment.

Testing that predicts adjustment outcomes takes place in a sterile, clinical

environment and may hold little validity, once the clients return to their own

surroundings. Similarly, the levels of adjustment for individuals with TBI in the

home environment and the work environment may have great differences.

Understanding adjustment deductively leaves many unanswered contextual

questions, while inductive methods such as case study research best answers

inquiries about perceptions (Stake, 1995).

Research Design

Of the qualitative methodologies, case study research permits the

researcher to collect data in a defined instance within the client's natural

setting. Case study research is the thorough examination of the particular(s) of

a bounded instance (Stake, 1995). Its goal is to learn about the phenomena

occurring within the instance defined and to assemble the phenomena into an

accurate understanding (Bogden & Biklen, 1992; Crisp, 1993; Stake; 1995).

The recollections and perceptions of individuals with traumatic brain injury are

the phenomena observed in this study and the defined time frame, or instance,

is the time of accident through the present. The participants were given the

opportunity to construct their memories and impressions of incurring their

injuries and adjusting to them by responding to a semi-structured interview.


Transcripts were prepared from audio-recorded interviews with the participants

to be analyzed. After the data transcripts were analyzed, case studies were

prepared for each of the participants. Last, the properties of each of the case

studies were compared with models of disability and traumatic brain injury



This study intensely examined the details of survivors with traumatic

brain injury. The five participants interviewed were enough, but not too many, to

understand the experiences this population had of adjusting to traumatic brain

injury. As Runkel (1990) stated, in order to understand the experiences within

the context of individuals, it is more relevant to study one specimen at a time,

rather than the entire haul caught. The participants were five adult survivors

with a divided gender distribution of three males and two females of mild to

moderate/severe traumatic brain injury. The rationale of the gender distribution

is because 75% to 80% of adult traumatic brain injury survivors are males

between the ages of 18 and 45 due to vehicular accidents and sports injuries

(Krauss & McArthur, 1999). The chances of finding adult males with traumatic

brain injury are higher, as females accounted for 20% to 25% of the adult

survivors of TBI. As this study focused upon adults with traumatic brain injury,

the participants were between 20 and 50 years of age who had participated in a

rehabilitation program. The number of years post-injury could vary, as it was

more relevant to include participants who had participated in a rehabilitation


program, but for the sake of defining the research parameters, participants

must have been at least one year post-injury.

Research participants were invited to volunteer for this research with the

"Invitation to Participate" (Appendix E). The theoretical sampling process used

in qualitative statistics as opposed to traditional random sampling used in

quantitative research was used to select respondents. Qualitative inquiry and

theoretical sampling focuses more on the individual case of concern and

conclusions are derived using inductive reasoning (Bogden & Biklen, 1992;

Gall, Borg, & Gall, 1996). The volunteers were solicited by two methods. First,

the researcher presented the study at various support groups in the

southeastern United States. Second, mailings were sent to two southeastern

universities inviting individuals with traumatic brain injury to participate.

Participants were screened further by asking them if they had accepted that

they were different. The final five participants responded that they were aware

that they had changed since their accidents and that they accepted these


The focus was upon the specifics of each case examined because of

the small sample size in qualitative case study research. After choosing the

participants from the pool of respondents to the "Invitation to Participate"

(Appendix E), meeting times for the interviews were arranged. During the

meeting times, participants read and signed the "Informed Consent" form

(Appendix D), then copies were made and sent to the participants later.


The amount of time spent with participants fluctuated between 3 to 4

hours. An interview was scheduled with each participant that lasted for

approximately 70 to 90 minutes each. Participants reviewed and provided

feedback for their respective case studies to ensure validity and reliability on

"Feedback Form 1" (Appendix B) at a second meeting during which participants

read their case studies. Had a second interview become necessary, the

participants would have scheduled a third meeting and would have been

interviewed a second time, indicating the feedback on "Feedback Form 2"

(Appendix C). All five participants indicated that they were satisfied with their

case studies.

Data Collection and Analysis

Participants received a copy of the questions intended for data collection during

semi-structured interviews (see Appendix A). The interview was semi-

structured in the sense that the interviewee had the flexibility to expand or

deviate from the questions to a reasonable extent. The questions initially were

open-ended. For example, what was your life like before your accident? What

was your rehabilitation experience like? How are your rehabilitation goals the

same or different as your rehabilitation team's goals? Describe your overall

experience of adjusting to traumatic brain injury. (See Appendix A.)

Subsequent questions and topics revealed additional information

leading to a more thorough understanding of relationships, coping

mechanisms, helps and hindrances in adjusting to their injuries that existed for

the participants. Such questions remained open-ended but were more


specific, such as "Tell me more about the experiences that your doctor helped

you with," or "what other obstacles existed for you during your rehabilitation and


The information was audio-taped and then transcribed into a computer

soon after each interview. Each 70- to 90-minute interview took 4 to 5 hours to

transcribe. Case studies were developed from the transcripts focusing on the

participants' perceptions and experiences of adjustment and rehabilitation to

traumatic brain injury. Each case study took approximately 3 hours to construct.

"Reliability and validity are determined by the participant in case study

research" according to Stake (1995). Therefore, each case study was

presented to each participant for review and given "Feedback Form 1"

(Appendix B). Spending approximately 2 additional hours with each participant

for the case study review, each participant indicated that they were satisfied

with the accuracy of their case studies, making second interviews that

warranted use of "Feedback Form 2" (Appendix C) unnecessary.

The data were analyzed using the constant comparative method that

consistently and cyclically compared the coded raw date until it had been

saturated (Strauss & Corbin, 1990). Saturation is reached when comparisons

and cross comparisons of the coded date and themes yield the same themes,

categories, and constructs (Strauss & Corbin, 1990; Glaser & Strauss, 1967).

Specifically, each of the transcriptions was scrutinized by line and by

word by this researcher looking for specific words and topics used by the

participants. Then, the codes in each set of transcriptions were recorded into


columns, scrutinized, and compared and recompared to determine common

themes. The themes were recorded and were then organized into the derived

categories. Further comparisons took place across the themes and compared

with the derived categories in order to determine constructs; five were

determined. Steps were taken to protect the identity of the participants. A same

gender "pen-name" was chosen or given in place of the first name of the

participant. The tapes and list with names matching the designated pen-

names were stored in a locked filing cabinet in a locked office.


Case study inquiry was used in this study to ascertain the descriptions

and interpretations of the participants. Five participants, two females and three

males between the ages of 20 and 50 with traumatic brain injury (TBI), were

selected for data collection. The purpose was to examine the perceptions of

these individuals after incurring traumatic brain injury and participating in a

rehabilitation program. This study was interested in accurately portraying the

particulars of what is like to adjust to TBI. The impressions of the participants

of their rehabilitation were of key interest. This purpose represented the

premise of intrinsic case study, one that studies a case for the sake of knowing

about that particular case (Stake, 1995). The case studies became

instrumental, however, with its second purpose (Stake, 1995). The second

purpose was to compare the perceptions and conceptions of the participants

with the constructs of TBI rehabilitation theory. Instrumental case studies were


conducted in order to understand something other than the particulars of the

individual case itself (Stake, 1995).

The results of these endeavors are contained in Chapter 4. A

discussion of observed comparisons between the constructs derived from the

participants and the constructs of TBI rehabilitation theory occurs in Chapter 5.


There are few studies that examine the perspectives of adjustment and

rehabilitation from the viewpoint of actual survivors of traumatic brain injury.

This chapter presents the results of five semi-structured interviews conducted

with individuals who have acquired traumatic brain injuries and participated in

rehabilitation modalities. These interviews were designed to ascertain the

perceptions and experiences that these individuals have of their adjustment

and rehabilitation processes after becoming injured. The qualitative case

study method of collecting data discussed in Chapter 3 was chosen in order to

answer questions that positivist inquiry could not. In order to gain an

understanding of the viewpoints of survivors, a phenomenological

understanding of their contexts must occur (Prigatano, 1999; Stake, 1995).

This is the only way to gain an understanding of what it is like to incur and

adjust to a traumatic brain injury, given the parameters that rehabilitation and

the environment provide. In doing so, an understanding of how rehabilitation

helped or impeded survivors in reaching their goals may be better understood.

The results of the interviews achieve the two purposes. One purpose

was to construct case studies of the individuals' experiences and perceptions

of adjusting to traumatic brain injury to determine any common themes and

constructs. Second, constructs derived from the data collected were to be



compared and contrasted with three models of adjustment to disability and

brain injury. The first portion of this chapter presents the results of the

constructed case studies. The second portion presents the results of the data

analyses that derived five constructs using the constant comparative method, a

systematic method for analyzing qualitative data developed by Glaser and

Strauss (1967). A discussion of the second purpose, to compare and contrast

the derived constructs with three models of rehabilitation to disability, takes

place in Chapter 5. The case studies presented below were constructed from

the transcripts and represent the perceptions of adjustment to traumatic brain

injury by five participants, two females and three males.

Case Study 1: Teresa Lynn

Teresa Lynn, accompanied by her mother, arrived for our interview

dressed casually in jeans and a shirt on a late Friday morning after attending

classes at a local community college. She was in good spirits and eager to

participate in the interview. She was a little embarrassed about being late and

explained that her mother had a schedule conflict. Socially, she presented

herself confidently and comfortably, though she admitted that she is

sometimes shy.

Teresa Lynn is a childless, unmarried, 22-year-old Caucasian woman,

with shoulder length, wavy, brownish hair. She currently resides with her

parents in a very rural area of north-central Florida, where she has spent all but

3 years of her life. Neither of her parents works currently, as her father has a

disability and her mother is not working so that she can help Teresa Lynn.


Teresa Lynn has one younger brother, 16 years old, almost 17, who resides

with her and her parents. She has two older half siblings, a half-brother 7

years older and half-sister 9 years older, that she has reunited with since her

accident in 1998. Teresa Lynn states, "It was really great to have them be a

part of my life again, so it is another good thing that has come from my


Teresa Lynn is very close with her family, whom she considers to be her

closest friends. She is very active in her church, where she has a strong

spiritual life and participates regularly in various volunteer activities. In her

spare time, she enjoys attending to her pets and other animals on their


Teresa Lynn is pursuing her Associate of Science degree in Physical

Therapy Assistant at a local community college. She states that she is in her

first term and is doing well in this program and is hoping to work one day

helping other people who have endured disability and injury. She participated

in preparatory courses before being admitted because she had to repeat her

last year of high school in order to regain what she lost as a result of the

accident. She states untiringly, "I really did not mind taking the preparatory

classes, even though it was basically a repeat of my senior year in high

school." She goes on, "I knew I would need to take these courses again in

order to understand the basics of my program, so it was okay."

Teresa Lynn wears glasses and ambulates independently with no

assistive devices. She practices driving on safe roads, but usually lets her


mother help transport her. She is currently driving herself to and from school

with mild intimidation in heavy traffic. She talks to herself to help keep calm in

tense situations, "Sometimes I pray and sometimes I sing to keep calm while


Teresa Lynn is a warm and congenial person who prefers to interact

socially in small groups with a few people at a time. She explains that the

majority of her school years were spent in north-central Florida, but her

seventh-grade year was in Nevada and her eighth- and ninth-grade years were

in Colorado. Teresa Lynn enjoyed fun times in Colorado, recalling times when

she and her brother would ride with her father in their pickup truck to the

mountains. Her father would shovel snow into the back of the pickup truck and

take it back to their house in the valley. There, he unloaded the snow where

she and the other kids in her neighborhood would play until it melted. Teresa

Lynn made good grades in school but states that she had to work at it. She

explains that she strived to get good grades and put fun second. She was

once an avid and talented photographer, having won various awards. She also

had a passion for clog dancing, enjoying traveling and doing shows with her

partners. For fun, she and her family ride four-wheelers, fish, and camp

whenever they can find the time. She states that she did not really date much in

high school and did not have a large network of friends, preferring to socialize

with her family and church.

Teresa Lynn's plans when she was in high school were to go into the

military and pursue a career as a registered nurse. She graduated in 1997


from high school and delayed her plans to enter the military because she and

her family experienced several major losses that year. Both of her

grandmothers died that year, and then her mother incurred cancer. She

decided to postpone her plans and stay home to help her family and mother.

She worked two jobs, one as a retail customer service associate and the other

as t-shirt printer. When her mother improved later in 1998, she decided to go

ahead and commit to the military in January of 1999 and pursue her plans of

becoming a registered nurse while in the military.

On November 11, 1998, Teresa Lynn's small blue pickup truck was rear-

ended and pushed into oncoming traffic, crashing head on into a larger full-size

brown pickup truck, demolishing both vehicles. She sustained a broken neck,

jaw, breast bone, several ribs, left knee, left hip, left shin bone, pelvic bone, and

left ankle. She also had a bruised heart, lungs, fractured right hip, and a

traumatic brain injury. Her right eye muscle was strained because of the

impact of the accident, causing it to stray. She was transported from the scene

of the accident by helicopter to the hospital where she was in a coma for

approximately 3 weeks.

She indicates remembering having talks and being with her deceased

grandmothers, the driver of the other vehicle, and angels while she was in a

coma. She learned much later in court that the driver died the day of the

accident. "I didn't know until later that he had died that day; I guess my family

was trying to protect me," she explained. Teresa Lynn was fined $500 for her

vehicle crossing the double line causing a fatality, and her license was