A PHENOMENOLOGICAL INQUIRY INTO THE FAMILY MEMBERS' EXPERIENCE OF
HAVING AN ADULT MEMBER WITH A TRAUMATIC BRAIN INJURY WITHIN THE
FIRST THREE YEARS
By
Erica Lynn Wondolowski

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
Rehabilitation Counselor Education – Doctor of Philosophy
2015

ABSTRACT
A PHENOMENOLOGICAL INQUIRY INTO THE FAMILY MEMBERS' EXPERIENCE OF
HAVING AN ADULT MEMBER WITH A TRAUMATIC BRAIN INJURY WITHIN THE
FIRST THREE YEARS
By
Erica Lynn Wondolowski
Traumatic brain injury (TBI) can range in severity from mild to severe, and the side
effects of such an injury can produce difficulties with visual-spatial relations, perception, sensory
distortions, swallowing, endurance, self-awareness, personality changes, and communication.
TBIs constitute approximately 1.7 million of various disabilities acquired annually and of those,
approximately 1.6 million individuals will live with TBI sequelae for the remainder of their life.
Family members are reported to be the predominant caregivers and/or health care proxies for
persons with a TBI rendering it essential that practitioners and researchers understand the family
responses to the disability in order to best serve and support both persons with TBI and their
families.
The purpose of the present study was to explore how immediate family members
describe, and what is the meaning of, the experience of having an adult family member with an
acquired TBI within the first three years. Six participants were recruited from a mid-Michigan
brain injury rehabilitation facility. Although each experience was unique with regard to how it
was felt and encountered, six themes were experienced across all six accounts. Those areas
were: (1) an abrupt onset requiring necessary and rapid response, (2) the multiform
manifestations of fear, (3) the significant role changes within the family system, (4) the diverse
practices for emotional expression and protection, (5) the depth to which grief is experienced,
and (6) the immutable alterations to established plans for the future. The current study provides a

glimpse into six different experiences of the familial experience of TBI, in addition to
interpretations and analyses of those experiences, to inform practitioner interactions and
treatment for family members of those persons with a TBI. The experiences shared within the
current study aligned with six of seven posited assumptions, in addition to the documented
attributions of stress as defined in the ambiguous loss literature. Implications for practitioners
and recommendations for future research are discussed.
Keywords: TBI, traumatic brain injury, family, ambiguous loss theory, coping and
adaptation, experience, clinical intervention

Copyright by
ERICA LYNN WONDOLOWSKI
2015

This dissertation is dedicated first and foremost to my mother, Gina Gianninoto, who without I
would have never embarked on this journey. You are always with me in my heart, no matter
where I go, as I am with you. This dissertation is also dedicated to the many family members of a
person with a traumatic brain injury. May they find and receive the level of help, support,
understanding, and care that they need and deserve.

v

ACKNOWLEDGEMENTS

This dissertation and the four years leading to this milestone have been a transformative period
in my life. Without the valuable insight, guidance, and support that my dissertation committee,
family, and friends provided along the way, this manuscript would not have come to fruition. I
am eternally indebted to each of you. Thank you for encouraging my inquisitive mind, for
challenging me to be greater than I ever thought possible, and for your unremitting faith in me.
I would like to begin by expressing my heartfelt gratitude and appreciation to my advisor
and committee chair, Dr. John Kosciulek, who provided the guidance, an attention to detail, and
a number of challenging discussions that greatly influenced the academic and researcher that I
am today. Thank you for helping me to see the value in the details. I thank Dr. Michael Leahy
for instilling what it means to be a “steward of the discipline” in me from my first day in the
program. His prolific involvement and continued passion for the field is what I hope to emulate
and share with others throughout my professional career. I thank Dr. Kyle Greenwalt for his
gentle guiding hand and positivity as I took on a methodology that was challenging on several
levels. His involvement in this dissertation has forever transformed my approach to qualitative
research. I thank Dr. Marsha Carolan for her evaluative mind, and for challenging me to see a
number of possible areas in which to conduct research that I had never thought of. Your
appraisal, application, and knowledge of family theories are immeasurable.
Most of all, I wish to thank my family and friends including my father, my brother, my
Aunt Nancy, the Saxtons, my church family at Lake Lansing Baptist Church, and the countless
others who have and continue to ground me, encourage me, make me laugh, and support me,
when necessary. Lastly, I want to thank Todd Lewicki who was much more than a classmate and
vi

a colleague, but a dear friend and confidante - thank you for lifting me up when I was down,
guiding me when I was lost, laughing with me at the absurdity of life, and for sharing in the
incredible and unique rollercoaster of this experience. We truly have a lifelong friendship that
has been forged in fire.

vii

TABLE OF CONTENTS

CHAPTER 1
INTRODUCTION ...........................................................................................................................1
Impact of Traumatic Brain Injury on the Family .................................................................2
Statement and Significance of the Problem .........................................................................5
Purpose of the Study ............................................................................................................6
Research Question ...............................................................................................................7
CHAPTER 2
LITERATURE REVIEW ................................................................................................................8
Impact of Traumatic Brain Injury on the Family .................................................................9
Psychosocial effects of traumatic brain injury on the family ................................11
Role changes ..............................................................................................12
Social support ............................................................................................13
Ambiguity ...................................................................................................13
Applicability of Ambiguous Loss Theory .......................................15
Different caregiver relationships ...............................................................20
Multicultural implications .........................................................................22
Positive consequences ................................................................................23
Family needs following traumatic brain injury......................................................24
Family coping and adaptation to traumatic brain injury ........................................25
Family integrated care............................................................................................30
CHAPTER 3
METHOD ......................................................................................................................................34
Research Design.................................................................................................................34
Participants .............................................................................................................35
Procedure ...............................................................................................................36
Instrumentation ..................................................................................................................39
Interview guide ......................................................................................................39
Bracketing, validity and reliability ........................................................................40
CHAPTER 4
RESULTS ......................................................................................................................................43
An Abrupt Onset Requiring Necessary and Rapid Response ............................................44
Interpretation and analysis .....................................................................................48
The Multiform Manifestations of Fear ..............................................................................49
Fear of mortality ........................................................................................49
Fear of wrong choice .................................................................................50
Fear of the ultimate outcome .....................................................................51
Fear of giving up........................................................................................51
Interpretation and analysis .....................................................................................52
The Significant Role Changes Within the Family System ................................................54
viii

Interpretation and analysis .....................................................................................59
The Diverse Practices for Emotional Expression and Protection ......................................61
Interpretation and analysis .....................................................................................64
The Depth to Which Grief Is Experienced ........................................................................65
Interpretation and analysis .....................................................................................71
The Immutable Alterations to Established Plans for the Future ........................................74
Interpretation and analysis .....................................................................................77
Information Not Included in Analysis ...............................................................................79
Adult children ........................................................................................................79
Tiana ......................................................................................................................81
Conclusion .........................................................................................................................82
CHAPTER 5
DISCUSSION ................................................................................................................................83
Comparison to Previous Research Findings ......................................................................84
An abrupt onset requiring necessary and rapid response .......................................84
The multiform manifestations of fear ....................................................................86
The significant role changes within the family system ..........................................88
The diverse practices for emotional expression and protection .............................89
The depth to which grief is experienced ................................................................91
TBI sequelae and the effect on the family ..................................................92
Psychosocial health and wellbeing ............................................................93
The loss of the person they once knew .......................................................95
The immutable alterations to established plans for the future ...............................98
Relationship of Findings to Ambiguous Loss Theory .....................................................100
The seven assumptions ........................................................................................103
A psychological family exists, and that this perceived construction of one’s
family may differ from the physical or legal family structure .................103
Ambiguous loss as an external situation is assumed to be neutral ..........103
Cultural beliefs and values influence a family’s tolerance for ambiguity
and how it is perceived ............................................................................104
With situations of ambiguous loss, truth is unattainable and thus relative
..................................................................................................................104
Ambiguous loss is inherently a relational phenomenon and thus cannot be
an individual condition ............................................................................105
There is a natural resiliency in families ..................................................106
A phenomenon can exist even if it cannot be measured...........................106
Considerations for the theory ...............................................................................107
Summary ..............................................................................................................108
Limitations .......................................................................................................................109
Implication for Practitioners ............................................................................................112
Recommendations for Future Research ...........................................................................114
Conclusion .......................................................................................................................115
APPENDICES .............................................................................................................................120

ix

APPENDIX A RESEARCH PARTICIPANT INFORMATION AND CONSENT FORM
..........................................................................................................................................121
APPENDIX B INTERVIEW PROMPT ..........................................................................124
REFERENCES ............................................................................................................................125

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CHAPTER 1
INTRODUCTION
Traumatic brain injury (TBI) is a disabling condition characterized by varying levels of
compromised cognitive functioning, impaired memory, and inappropriate affect, among others
(Falvo, 2009). TBI can range in severity from mild to severe, and the side effects of such an
injury can produce difficulties with visual-spatial relations, perception, sensory distortions,
swallowing, endurance, self-awareness, personality changes, and communication (Falvo, 2009).
TBIs constitute approximately 1.7 million of the disabilities acquired annually, including those
who die as a result of the injury (U.S. Department of Health and Human Services, Centers for
Disease Control, National Center for Injury Prevention and Control, 2010). Of those 1.7 million
individuals who acquire a TBI, approximately 52,000 pass away, 275,000 are hospitalized, and
1.365 million are treated and released from an emergency department. For the approximately 1.6
million individuals who will live the remainder of their life with a TBI, it is essential that
practitioners and researchers understand the family responses to the disability acquisition in
order to best serve and support both individuals with TBI and their families. Understanding the
familial response is important, as family members are reported to be the predominant caregivers
and/or health care proxies for this population (Degeneffe & Burcham, 2008; De Jong, Batavia, &
Williams, 1990; Kolakowsky-Hayner, Miner, & Kreutzer, 2001).
Finkelstein, Corso, and Miller (2006) estimated that the annual economic cost of TBI in
the United States in the year 2000, including direct medical, rehabilitation, and societal costs,
was approximately $60 billion. Gray (2000) reported findings that indicate that improvement
may continue for months to years following initial injury, often in the absence of formal

1

rehabilitative care. DePompei and Williams (1994) stated, “Shrinking health care budgets and a
growing national commitment to managed care necessitate the empowerment of family and
community members so that they can assume roles once played by professionals alone” (p. 79).
Therefore, it is critical for individuals living with a TBI to be provided ongoing support and for
those family members in the individual’s life to be supported and provided the resources
necessary to handle the consequential changes in their loved one, in addition to any care they
may need.
Impact of Traumatic Brain Injury on the Family
How the caregiver perceives the impact of the TBI on their loved one is reputed to
regulate the degree to which the caregiver believes their loved one has changed (Oddy, 1995).
Those persons with a TBI who demonstrate greater overall change are more likely to have a
caregiver who perceives considerable burden and manifests greater, problematic mental health
symptomology. Multiple researchers have supported the conclusion that certain sequelae and
impacted characteristics are more likely to result in greater caregiver burden, overall lower
family function and life dissatisfaction. Behavioral, personality, and emotional characteristics
are reported to be the most influential, with problems including childishness, lability, adynamia,
irritability, and aggression being the most disturbing (Brooks, Campsie, Symington, Beattie, &
McKinlay, 1987; Kosciulek, 1995; Kreutzer, 1992; Livingston, Brooks, & Bond, 1985;
McKinlay, Brooks, Bond, Martinage, & Marshall, 1981; Oddy, Humphrey, & Uttley, 1978;
Thomsen, 1974; Thomsen, 1984). The repercussions of the TBI on the individual family system
have been reported to continue to have an impact over 15 years post-injury (Frosch et al., 1997).

2

Psychiatric morbidity is also posited to be related to the number of unmet needs, and to
the total number of complications brought on by the TBI that are perceived by the caregiver
(Kreutzer, Gervasio, & Camplair, 1994a; Moules & Chandler, 1999; Nabors, Seacat &
Rosenthal, 2002). Caring for an individual with traumatic brain injury has been posited to result
in a variety of difficulties, including, but not limited to, stress, affective disturbance, depression,
anxiety, psychosomatic disorders, substance abuse, financial difficulties, and poor social
performance (Albert, Im, Brenner, Smith, & Waxman, 2002; Flanagan, 1998; Lefebvre &
Levert, 2012; Leith, Phillips, & Sample, 2004; Murray, Maslany, & Jeffery, 2006).
Depending upon the severity and the level of impact on functioning, the person with the
disability may no longer be able to fulfill the roles s/he operated within, such as husband, wife,
child, and employee (Frosh et al., 1997). The loss of this person’s roles in the family can result
in other family members having to compensate for this absence, by taking it on themselves. In
addition to balancing the addition of multiple roles, caregivers may feel “overwhelmed due to the
lack of assistance by other significant others, feeling restricted socially and dealing with the
reality that their pre-morbid loved one may be permanently different” (Elbaum, 2007, 275; Dell
Orto & Power, 2000). Ergh, Rapport, Coleman, and Hanks (2002) reported that those caregivers
who did not receive adequate social support felt increasing distress as time since the disability
onset accrued. Protective personal and environmental resource factors for caregivers include
functional competency, caregiving appraisal, coping, perceived social support, and family needs
(Chronister, Chan, Sasson-Gelman, & Chiu, 2010).
Multiple researchers have provided evidence that family needs continue to go unmet for
several years following hospital discharge (Albert, et al., 2002; Stebbins & Leung, 1998).
Family needs expanded from focused acute medical and professional support during the first two

3

years following onset to an expanded range of needs, including community supports, financial
resources, caregiver supports, and health information (Kosciulek, 1995; Stebbins & Leung,
1998). Reported needs include understanding treatment, pain management, and financial
resources, including insurance. Other concerns include finding and evaluating providers,
hospital discharge support, employer support for the family caregivers, and life planning
assistance (Lefebvre & Levert, 2012; McLennan, Starko Anderson, and Pain, 1996; Rotondi,
Sinkule, Balzer, Harris, & Moldovan, 2007; Sinnakaruppan & Williams, 2001). Leith, et al.
(2004) proposed that the family often has informational, networking, and support needs highly
similar to the individual with the traumatic brain injury.
Brooks (1991) posited that the family members will be impacted equally to that of the
member with the brain injury, if not more so. As it is highly likely that the family’s ability to
cope emotionally and practically directly impacts the person with the brain injury, research in
this area is pertinent (Dausch & Saliman, 2009; Oddy & Herbert, 2003). Several predictive
variables have been explored, including Kosciulek’s (1994) family tension management and
positive appraisal variables, affect/behavior variable (Kosciulek & Lustig, 1998), family schema
and adaptation (Kosciulek, 1997b), and family type (Kosciulek, 1995).
Three coping dimensions for the families of a person with a brain injury are identified in
the literature. These dimensions are individual-to-family versus family-to-community coping,
family-respite versus head-injury focused coping, and cognitive versus behavioral coping
(Kosciulek, 1994; Kosciulek, 1997b). A later replication and extension study identified two
dimensions by which the family copes with head injury: social support versus cognitive coping,
and head-injury-focused coping versus family tension management (Kosciulek, 1997b). Poor
adaptation was partly attributed to a lack of long-term resources available for family members

4

(Kosciulek & Pichette, 1996). Often, support for the family ends when the family member with
the brain injury leaves acute care and is released to the family for ongoing, home-based care,
resulting in a struggle to adapt successfully to having a family member with a traumatic brain
injury (Kosciulek & Pichette, 1996).
Statement and Significance of the Problem
In September 2010, my mother acquired a TBI, after collapsing and aspirating in her
home where she lived alone. She spent over a month in a medically induced coma, being
sustained through a variety of tubes and machines. As the doctors lowered her dosage of
sedating medications and my mother began to awaken from the coma, it was immediately
apparent just how markedly different her personality was in comparison to before her accident.
A glazed look had become the default appearance of my mother’s face. When she looked at you,
it felt as though she was looking through you. Her words, if she could find any to say, were
jumbled and often used inaccurately. Prior to her accident, my mother always knew what she
wanted to say and had no problem saying it, to anyone. Now, driven by what can only be
perceived as frustration from being trapped in a body that does not work to her liking, my mother
was displaying signs of aggression and acting out violently. In the year following her TBI
acquisition, my mother would scream, cry, get very frustrated, and on one occasion, she even
blackened my eye and spat in my face.
My mother eventually was able to find certain words and phrases that she could use
accurately. Her responses could not always be relied upon, however, because she developed a
tendency of parroting, or repeating what you had said, and of providing the answer she thought
you wanted to hear. Four years since the accident, my mother believes she is 21 years old and

5

that she is still married to my father. Both are untrue. She experiences periods where she may or
may not remember the names of her loved ones. While her long-term memory has been
significantly impacted, her short-term memory is nearly non-existent. If I leave the room for
more than 20 minutes, my mother forgets I was even there, and she welcomes me into her room
as if she had not seen me in ages.
With my mother’s TBI acquisition, I mourned and grieved the loss of my mother. I
thought about how this woman would never be able to help me plan for a wedding or tell me
what pregnancy and childbirth may be like. She would never be the grandmother that she had
looked forward to being; making cookies with her grandchildren and watching them grow. As I
mourned, and as friends around me experienced the death of their respective loved ones, I often
heard, “You are so lucky. Your mom is still here.” I was irate; she was not still here. She was
the shell of who she once was and I can never ask her to tell me about my childhood or the story
of how my parents met. She looked like my mother and sounded like my mother, but was not
my mother. Trapped within the ambiguity of the situation, I knew that I could not be the only
family member who has felt this way. Given that not every case of TBI is as significant or
severe as that of my mother, and therefore will not replicate similar sentiments, for those of us
who are in comparable situations, I believe that there are a number of shared themes in the
experience of having a loved one with a severe TBI. It is because of my personal account and
the belief that I am not alone in my experiences that this study has taken root.
Purpose of the Study
Given that family members are significantly affected by TBI, it is imperative for TBI
service systems and brain injury rehabilitation programs to provide resources and support as the

6

family members adjust to the change in personal roles within the family system, and to the new
person before them. In collecting data related to the family members’ experience of having a
family member who has acquired a TBI later in life, it may be possible to identify similar themes
across accounts. The purpose of this phenomenological study was to describe the initial
experience, and what is the meaning of, the experience of having an adult family member with
an acquired Traumatic Brain Injury (TBI) within the first three years. The family experience of
having an adult member with a TBI was defined as those initial experiences, cognitions, and
reactions that occurred within three years of the disability onset. The application of ambiguous
loss theory to the experiences shared in this study was assessed. By identifying an appropriate
theory, practitioners and researchers may be able to develop evidence-based practices or grief
models that work successfully with the family of a person with a disability.
Research Question
Given the significant impact of TBI on the family, additional data is needed to guide state
and national TBI rehabilitation service systems, specific traumatic brain injury rehabilitation
programs, and individual practitioners so that they may more effectively meet family coping and
adjustment needs. As such, using a qualitative, phenomenological approach, the purpose of the
proposed study is to collect, summarize, and report data from the perspective of individual
family members on their initial experiences of having an adult family member with an acquired
TBI. The research question used to address this purpose was: How do immediate family
members describe, and what is the meaning of, the experience of having an adult family member
with an acquired TBI within the first three years

7

CHAPTER 2
LITERATURE REVIEW
Traumatic brain injury (TBI) is a disabling condition characterized by varying levels of
compromised cognitive functioning, impaired memory, and inappropriate affect (Falvo, 2009).
TBI can be acquired by individuals of all ages, often resulting in some degree of assisted living
need or compensatory skill execution. Side effects of a TBI can produce difficulties with visualspatial relations, perception, sensory distortions, swallowing, endurance, self-awareness,
personality changes, and communication (Falvo, 2009).
TBI has been described as a “signature injury” of the recent wars and battles, with as
many as 22% of military personnel returning home with a brain injury (Stein & McAllister,
2009, p. 3; Terrio et al., 2009). Unique to the military sub-population is the high co-morbidity
between the TBI and mental health symptoms and issues such as post-traumatic stress disorder
(PTSD), anxiety, suicidality, and substance abuse (Hoge, Auchterlonie, & Milliken, 2006;
McNulty, 2005; Jacobson et al., 2008). TBI injury is not solely encountered by military
personnel, however.
Traumatic brain injuries constitute approximately 1.7 million of the disabilities acquired
annually (U.S. Department of Health and Human Services, 2010). Of those, about 52,000 die,
275,000 are hospitalized, and 1.365 million are treated and released from an emergency
department. Most of the 1.365 million individuals living in the general public are doing so with
the assistance and care of family (DePompei & Williams, 1994). It is necessary, then, to fully
understand the impact of TBI on the family to better serve both family members and the
individual with the TBI.

8

The purpose of this phenomenological study was to describe the initial experience of
having an adult family member with an acquired TBI. An understanding of the nature of TBI, in
addition to the overall impact of TBI on the family system was necessary prior to this study’s
data collection and analysis of families’ initial reactions to the disability. Therefore, the literature
review addresses the following areas of impact: a) the psychosocial impact of TBI on the family,
b) family needs following injury, c) coping and adaptation processes executed by the family
following TBI acquisition, and d) an overview of the concept of family integrated care.
Information pertaining to Ambiguous Loss Theory (Boss, 1987; Boss, 1999) is presented at
various stages in the literature to provide a potential theoretical basis for familial reactions.
Impact of Traumatic Brain Injury on the Family
Illustrations of personality change in the individual with a TBI include the blunting of
emotions, a loss of inhibition, inflexible concrete thinking and irritability. The blunting of
emotions, although having some benefits such as appearing less anxious than one may actually
feel, can be detrimental to interpersonal relationships. Such a change may be perceived by others
as a lack of caring or desire. Disinhibition, resulting from cognitive consequences of the TBI, is
particularly troublesome for the family as it may contribute to the individual engaging in actions
that may be risky or life threatening, without concern. Inflexible concrete thinking and
irritability can also be difficult for family members to understand and adjust to, as it often results
in the person with a TBI becoming highly agitated if demands are not met or things do not occur,
as they believe they should (Oddy, 1995). Lezak (1978) proposed five areas of personality
change that most likely generate conflict within the family system and between individual
members: impaired social perceptiveness, impaired control and self-regulation, stimulus-bound
behavior, emotional alterations, and inability to profit from experience.

9

As previously discussed, a majority of the 1.365 million individuals living in the general
public are doing so with the assistance and care of family (DePompei & Williams, 1994),
indicating that caregiver literature may have high applicability to family members of a person
with a TBI. How the caregiver perceives the impact of the TBI on these areas in their loved one
is reputed to regulate the degree to which the caregiver believes their loved one has changed
(Oddy, 1995). Persons with traumatic brain injuries who demonstrate greater overall change are
more likely to have a caregiver who feels increased burden and manifests greater mental health
symptomology. Flanagan (1998) postulated that in addition to post-injury deficits and changes,
the kin relationship between the caregiver and the person with the TBI, as well as the ability of
the family system to cope with the crisis-imposed stresses, could determine the extent to which
that family system is affected by the TBI. Furthermore, the trajectory of the illness and
rehabilitation of the individual with the TBI is reported to influence the level of hope
experienced and overall functioning enacted by the family system and individual members
(Brooks, 1991; Duff, 2002; Knight, Devereux, & Godfrey, 1998). Other research, however,
contradicts the aforementioned findings. For example, Kreutzer, et al. (1994a) postulated that
neither injury severity nor functional outcome is significantly related to caregiver distress or
overall family functioning.
Many researchers have provided support for the conclusion that certain sequelae and
impacted characteristics are more likely to result in greater caregiver burden, overall family
function, and life satisfaction. Behavioral, personality, and emotional characteristics are reported
to be the most influential, with problems including childishness, lability, adynamia, irritability,
and aggression being most disturbing (Brooks, et al., 1987; Kosciulek, 1995; Kreutzer, 1992;
Livingston, et al., 1985; McKinlay, et al., 1981; Oddy, et al., 1978; Thomsen, 1974; Thomsen,

10

1984). Other research has provided insight regarding the impact of cognitive problems within
the person with the TBI, and the subsequent influence on the caregiving experience. Issues
pertaining to memory, concentration, problem-solving difficulties, and executive functioning are
argued to have an inverse relation to caregiver life satisfaction (Ergh, et al., 2003; Kneafsey &
Gawthorpe, 2004; Ponsford, Olver, Ponsford, & Nelms, 2003; Semlyen, Summers & Barnes,
1998). The repercussions of the TBI on the family system have been reported to continue to
have an impact over 15 years post-injury (Frosch et al., 1997).
Psychosocial effects of traumatic brain injury on the family. Caregiver emotional
distress begins upon injury onset and is exacerbated when the individual with the TBI is
discharged from acute care. The exacerbation of distress is reported to occur due to uncertainty
of the future, the level of anticipated necessary caregiving, overall condition prognosis, and the
perceived coping ability of the caregiver (O’Callaghan, McAllister, & Wilson, 2011; Turner et
al., 2007). Psychiatric morbidity is postulated by several researchers to be related to the number
of unmet needs, and the total number of complications brought on by the TBI as perceived by the
caregiver (Kreutzer, et al., 1994a; Moules & Chandler, 1999; Nabors, et al., 2002).
Caring for an individual with a TBI has been reported to result in a variety of difficulties,
including, but not limited to stress, affective disturbance, depression, anxiety, psychosomatic
disorders, substance abuse, financial difficulties, and poor social performance (Albert, et al.,
2002; Flanagan, 1998; Lefebvre & Levert, 2012; Leith, et al., 2004; Murray, et al., 2006).
Research postulates that between 31%-45% of relative caregivers of individuals with a TBI
report clinically significant anxiety, and 21%-32% report clinically significant depression
(Flanagan, 1998; Kreutzer, et al., 1994b; Perlesz, Kinsella, & Crowe, 2000; Ponsford, et al.,

11

2003). Semlyen, et al. (1998) emphasized that in addition to depression, irritability, stress and
anxiety, that:
There also is evidence that this increased stress contributes to a relatively high incidence
of physical, emotional, and psychosomatic disorders among caregivers, and several
investigators have reported the frequent use of tranquilizers, sleep medication, and
alcohol to help caregivers cope with the effects of the person’s injury. (p. 53)
By 12 months post-injury, families begin to establish a clear picture of the situation they are
faced with and an idea of what the future will look like. The daily, ongoing life of the family
members and the caregiver has been forever changed (Ponsford, et al., 2003; Rappaport,
Herrero-Backe, Rappaport, & Winterfield, 1989; Thomsen, 1984).
Role changes. Depending on the severity and the level of impact on functioning in the
individual with the TBI, the person with the disability may no longer be able to fulfill the role
s/he operated within, such as husband, wife, child, and/or employee (Frosh et al., 1997). The
loss of this person’s role in the family may result in other family members having to compensate
for this absence by absorbing it themselves. The impact on caregivers may result in the lowering
of overall life satisfaction, an increase in perceived caregiver burden, and the perception that the
individual with the TBI has a greater number of behavioral consequences from the injury (Frosch
et al., 1997; Kosciulek & Lustig, 1998; Man, 2002). In addition to balancing the addition of
multiple roles, caregivers may feel “overwhelmed due to the lack of assistance by other
significant others, feeling restricted socially and dealing with the reality that their pre-morbid
loved one may be permanently different” (Elbaum, 2007, p. 275; Dell Orto & Power, 2000).

12

Social support. As it pertains to the psychosocial impact of having a family member
with a TBI, multiple researchers have concluded that when social support needs have been met,
perceived burden levels of caregivers are lowered, and the quality of life, mastery, and overall
satisfaction improves (Chronister, et al., 2010; Dell Orto & Power, 2000; Elbaum, 2007; Frosch
et al., 1997). Conversely, it has been reported that those caregivers who do not receive adequate
social support feel increasing distress as time since disability onset accrued (Ergh et al., 2002).
Protective personal and environmental resource factors for caregivers include functional
competency, caregiving appraisal, coping, perceived social support, and family needs
(Chronister, et al., 2010).
Ambiguity. The physical, cognitive and emotional losses following a TBI can be
devastating to the family system (Muir, Rosenthal, & Diehl, 1990). Subtle changes in areas such
as sense of humor, compulsive behavior, or use of manners can make the survivor with the TBI
appear as a stranger in their own home (Oddy, 1995). In support of Oddy (1995), Muir, et al.
(1990) reported:
In some cases, the survivor’s family members report that fundamental aspects of the
survivor’s personality have changes [sic], that the person they could depend on to fulfill
their expectations and needs no longer exists. In other words, that the person they knew
and loved is ‘dead’. (p. 436)
The extensive loss of control over a situation, including ambiguity, may block the coping and
grieving process of the family, often resulting in greater depression, anxiety, and family conflict
symptomology (Boss, 1999; Duff, 2002). The ambiguous nature of a TBI can feed feelings of
anxiety and confusion in the family, making them cautious about sharing concerns about death

13

and loss to others outside of the experience. Such a situation hinders the family members’ ability
to adapt and cope with the sudden onset of the TBI in a loved one (Walsh, 2006). Consequently,
“family members may be tormented, hoping for the best while fearing the worst”, and
developing problematic clinical symptomology (Walsh, 2006, p. 201; Boss, 1999).
The point at which an individual enters acute care for the TBI can be devastating to the
family who are also present at this time. Dependent upon the severity of the injury, there may be
several life sustaining technologies utilized, as well as physicians and other care team members
who are instructing the family that their loved one may not survive the injury (Oddy, 1995). For
many families early on in the TBI acquisition process, there are two possible outcomes: death or
living. Living, however, is automatically interpreted as a full recovery from the injury and a
return to the person the individual was prior to acquisition. Although this is most often not the
case, it is one of the leading factors associated with the reported extended grieving processes
(Oddy, 1995). The perception of the individual with a TBI as “a stranger” or as being “no longer
the same person” is a common sentiment and experience shared by family members, often
brought about by subtle changes in the personality of the individual with the TBI (Del Orto &
Power, 2000; Oddy & Herbert, 2008).
Romano (1972) reported that personality death is far greater of a loss than physical death.
With physical death, the individual is no longer present in the day-to-day world. With
personality death however, as often occurs with TBI, the uncertainty of whether the person will
recover and reassume their prior personality and role often leaves family members in a state of
constant or extended grief (Lezak, 1978; Oddy, 1995; Oddy & Herbert, 2008). Uncertainty of
recovery is postulated to be related to the “trajectory of illness and the eventual cognitive,
physical, and behavioural outcomes that resulted from the injury” (Duff, 2002, p. 15). Man

14

(2002) reported that family reactions and pursuit toward coping with a TBI mirrors that which
would be seen as a normal process by a family that is facing the death or trauma of a loved one.
Kűbler-Ross’ (1969) model of grieving has previously been applied to families of people
with a TBI (Elbaum, 2007; Lehr, 1990), despite the physical death associated with the original
model. Application of this model has also been recently disputed, as the original model is linear.
Research has hypothesized that the stages may be experienced by family members of individuals
with a TBI out of order, many at once, or not at all (Degeneffe, 2001; Williams, 1993). It
becomes important, then, to identify a grief model that families of individuals with a TBI work
through. In doing so, clinical practitioners can begin to better serve family members during
acute care, and to provide greater long-term support following discharge.
Applicability of ambiguous loss theory. Ambiguous loss theory, conceptually based in
family stress theory (Boss, 1987), is defined by Boss (1999) as "an incomplete and uncertain
loss" (p. 3). According to this theory, loss can occur in two different ways: The family member
can be physically present but psychologically absent, or physically absent and psychologically
present. Without resolve, families may find that the loss could very likely control daily events,
in addition to shaping the long-term experience of every member within the family. Boss (2006)
concluded that ambiguous loss is the “most stressful kind of loss because it defies resolutions
and creates long-term confusion about who is in or out of a particular couple or family” (p. xvii).
Three of the seven assumptions that are presented by Boss (2007) are that ambiguous loss theory
assumes that a) a psychological family exists, and that this perceived construction of one’s
family may differ from the physical or legal family structure; b) with situations of ambiguous
loss, truth is unattainable and thus relative; and c) there is a natural resiliency in families.

15

At the core of ambiguous loss theory, the family system finds itself compromised. Due
to the decline in functioning of the particular member, others are required to work hard in roles
where they might not feel as competent, resulting in the confusion of family dynamics, roles, and
responsibilities (Von Suhr, 2003). The impact that ambiguous loss has perseverates throughout
every aspect of a family member's life: physical, cognitive, behavioral, and emotional (Boss,
1999; Weiner, 1999). Physical symptoms include fatigue, headaches, and sleep disruption, while
cognitive issues manifest as an ongoing preoccupation with the loss and its surrounding
circumstance, forgetfulness, and worry. Behavioral impacts include persistently remaining quiet,
hypervigilance, dependence, avoidance, and overall withdrawal from daily activities. Lastly,
emotional complications from ambiguous loss include loneliness, anger, irritability, anxiety,
depression, or apathy (Betz & Thorngren, 2006; Blieszner, Roberto, Wilcox, Barham, &
Winston, 2007; Boss, 1999; Boss, 2002; Weiner, 1999).
Betz and Thorngren (2006) acknowledged that this phenomenon might result in family
members going through cycles of hope and disappointment, stating, "The unpredictable nature of
an uncertain future leaves family members in a reactive position. The family may feel
tremendous guilt and may be unable to make decisions, fearing that the wrong choice will be
made" (p. 361). Ambiguous loss is characterized by factors that inherently impede the grieving
processes due to intangible or uncertain resolution to the loss, and freeze family dynamics until a
clarity, which never comes, is attained (Betz & Thorngren, 2006; Boss, 1999; Boss, 2002; Boss,
2004). The concept of being frozen in grief can lead to the manifestation of “prolonged,
pathological grief states” in family members (Von Suhr, 2003, p. 49). Other key facets of
ambiguous loss include the cyclical raising of hopes and subsequent disappointment, which may

16

lead to a psychically numb state, a withdrawal from social support systems, and family member
exhaustion, with support burnout due to the ongoing nature of the loss (Harris & Gorman, 2011).
Brain injuries may result in cognitive and physical impairments in addition to a
disruption in self-image and interpersonal relationships. Research on populations who have a
TBI, have shown that boundary ambiguity develops as a result of such disruptions (Landau &
Hissett, 2008). Kean (2010) reported that when speaking to family members of individuals who
have a TBI, most utilize the past tense when discussing their loved ones. It is believed that as the
families try to adjust to life with a family member who has a TBI, their “use of the past tense
without it ever being consciously acknowledged as loss at that time” emerges (Kean, 2010, p.
70).
Previous applications of ambiguous loss theory to persons with a disability have reported
significant support for its use. Patrick-Ott and Ladd (2010) reported the presence of the
ambiguous loss phenomena when studying parents of children who had been born with a
disability, stating that “feelings of loss and disappointment are revisited throughout the child’s
life span as the child grows, matures, and yet is unable to master age-appropriate developmental
milestones or experiences” (p. 76). Many disabilities are difficult to diagnose, and those that are
diagnosed often have no cure, leaving the disability and the individuals involved with a high
level of ambiguity. In fact, it has been reported that “the deluge of ambiguity often becomes as
debilitating as the illness itself. Innumerable diagnostic tests meant to clarify one’s prognosis
make people feel as though they’re riding an emotional roller coaster between hope and
hopelessness” (Boss & Couden, 2002, p. 1352).

17

As applied to family members of those who have Alzheimer’s or Dementia, the changes
from being characteristically “normal” functioning towards deeper progression into the condition
results in feelings of frustration and distress (Blieszner et al., 2007; Boss, 2004; Boss & Kaplan,
2003). What is often observed in adult children of individuals with these two disabilities is a
fluctuation between accepting and rejecting the caregiving role, primarily due to the confusion
surrounding new responsibilities and roles within the family construct. According to ambiguous
loss theory, this confusion can result in frozen grief and, subsequently, “behavioral and
psychological helplessness” (Boss, 2004, p. 211). It is important to note, however, that these
postulations and findings may vary by cultural and societal standards. In a preliminary study
conducted by Boss (2004) with Ojibway Indian women who were caring for a family elder,
negative descriptors were seldom used in regard to the elder’s dementia. The Native women
objected to the words such as “burden” or “stressful”, instead viewing the situation as part of the
circle of life.
Ambiguous loss theory is particularly well suited for application to the familial response
to a TBI within the family unit, due to the unique and irreconcilable nature of the condition. As
has been seen with TBI and ambiguous loss theory respectively, the ambiguity surrounding the
given situation’s loss may interfere with adaptation, and can produce depression and conflict
(Betz & Thorngren, 2006; Blieszner, et al., 2007; Boss, 1999; Boss, 2002; Weiner, 1999).
Despite many parallels that have been drawn between this theory and the condition of TBI, this
particular pairing of the two has gone practically unstudied. Rather, the literature has focused
more on other conditions with a compromised cognitive component such as Alzheimer's and
Dementia.

18

High levels of distress in the families of individuals with a TBI have been present as far
as 15 years post injury, due in part to an inability to reconcile grief (Florian & Katz, 1991;
Koskinen, 1998). Family members may find themselves beleaguered, hoping for the best
(complete recovery) while fearing the worst (death) (Walsh, 2006). As with ambiguous loss
theory and TBI, independently, the ability to meet societal criteria for grief appropriateness is
often not achieved. Such a situation leaves family and friends of the person who has acquired
the TBI in a constant state of grief, compounded by forced isolation brought about by society
implying that their grief is not warranted (Del Orto & Power, 2000; Harvey, 2000; Harvey, 2002;
Kozloff, 1987; Oddy & Herbert, 2008; Sacks, 1970; Walsh, 2006). Furthermore, levels of
expressed emotion have been reported to remain contingent on the caregivers’ perceptions of
social support, and the degree to which the burden of caring can be shared with others (Flanagan,
1998). Boss (1999) stated that:
Ambiguous loss can cause personal family problems, not because of flaws in the psyches
of those experiencing the loss, but because of situations beyond their control or outside
constraints that block the coping and grieving process…the greater the ambiguity
surrounding one’s loss, the more difficult it is to master it and the greater one’s
depression, anxiety, and family conflict. (p. 7)
Groups available for spouses and family members of individuals with a TBI can provide ongoing
support to those individuals who society may casually label as too quick to grieve. In
acknowledging the profound effect that a TBI can have on the family system and on the
individual who acquired it, support groups validate the emotions and extended grief that is often
associated with this injury (Harvey, 2000).

19

Different caregiver relationships. Due to the frequently changing friendship
dichotomies following a TBI, most often the immediate family becomes the primary and sole
resource for the person with the TBI (Muir, et al., 1990). Degeneffe (2001) posits that family
members often provide care for loved ones with a TBI out of obligation and necessity rather than
voluntary choice. The sense of duty or commitment that reportedly exists within the confines of
a kindred relationship can serve as a predictor for increased depressive symptomology (Kreutzer,
et al., 1994a). Despite research postulating that the caregiver of male individuals with a TBI will
experience greater negative burden (Knight, et al., 1998), conflicting studies report that families
of females with TBI are associated with greater family distress (Gan, Campbell, Gemeinhardt, &
McFadden, 2006).
Research has further proposed that needs vary depending upon the role that each family
member assumes within the family system. Parents of the individual with the TBI are more
likely to endorse greater met needs when the individual is perceived to have more physical
problems, whereas spouses are less likely to endorse met needs when physical problems are
perceived (Devany Serio, Kreutzer, & Gervasio, 1995). More specifically, spouses are
especially impacted by behavior and cognition problems of the individual with the TBI (Devany
Serio, et al., 1995).Family members’ perception of the loved one’s neurobehavioral status has
been reported as a good predictor of family needs.
Several studies have examined the differences and similarities between caring for a
spouse and caring for a child with a TBI. Spouses of individuals with a TBI have been reported
to show significantly greater symptomology of depression, anxiety, and psychoticism (Kreutzer,
et al., 1994b). Perlesz, Kinsella, and Crowe (1999) conclude that:

20

A number of variables have been found to have a significant impact on marital strain or
spouse distress: financial hardship, severity of injury, psychosocial maladjustment of the
patient; restrictiveness in the day to day physical functioning of the patient; the person
with TBI being a father of young children, lack of support in physically caring for an
injured spouse, loss of a peer based, supportive relationship, less marital cohesion and
increased marital conflict, and role changes. (p. 20)
Overall, a majority of the literature is in agreement that spouses, specifically wives of individuals
with a TBI, are more significantly impacted by the TBI in a spouse than mothers who care for
children with a TBI (Lezak, 1978; Lezak, 1988; Livingston, et al., 1985). Despite wives
showing significantly greater levels of anger and less satisfaction with family life, parents of
individuals with a TBI expressed significantly more pessimism and concern for the future of
their children (Knight, et al., 1998; Perlesz, et al., 2000).
Being a sibling to a person with a TBI also lends to the cultivation of negative
symptomology and feelings of burden. Whether adult or under the legal age of 18, most siblings
hold highly pessimistic views on the attainability of successful rehabilitation for their brother or
sister (Degeneffe & Olney, 2008). Cynical views on their sibling’s potential reportedly results in
a significant level of anxiety and distress. Understandably, siblings of individuals with a TBI
tend to perceive their families as functioning at a significantly lower level than those siblings of
individuals without a TBI (Gan, et al., 2006). Most sibling literature, however, concludes that
the needs of, and impact on, siblings mirror that which have been reported for other family
caregivers such as those discussed above (Degeneffe & Olney, 2008).

21

Due to the level of dependence that a child has on their parents, the impact on children of
a person with a TBI is profound. Urbach and Culbert (1991) posit that sequelae that are most
problematic include “memory loss, confusion, cognitive impairment…behavioral disturbance
and personality change” (p. 31). Children may feel as though they have lost a person they
considered a role model and look to the other parent, or a surrogate if the parent is unavailable, to
assume some of the injured parent’s role in their life (Urbach & Culbert, 1991). Socially, the
child may develop argumentativeness, anger, or a passive-aggressive demeanor (Pessar, et al.,
1993; Urbach & Culbert, 1991). Pessar et al. (1993) postulate that the age of the child at time of
TBI onset aids in determining the extent to which the child my experience struggles with the
parent who has the TBI. Such difficulties may include displays of “being less loving toward the
injured parent, not wanting to spend time with the injured parent and not bringing friends home”
(Pessar, et al., 1993, p. 238).
Several other factors have been researched that pertain to the impact of TBI on caregiver
burden and overall caregiver quality of life. Those with lower number of years of education and,
subsequently, those caregivers with lower household incomes are postulated to have an increased
perception of caregiver burden related to the cognitive, affective, and behavioral impairment of
the person with the TBI (Nabors, et al., 2002, 1046). Age of the caregiver is also asserted to be a
mitigating factor on caregiver satisfaction and burden. That is, younger caregivers, report fewer
needs that they feel have been met (Mitchley, Gray & Pentland, 1996; Moore, Stambrook,
Peters, & Lubusko, 1991; Nabors, et al., 2002).
Multicultural implications. Investigation into the multicultural impact on caregiving for
individuals with a TBI has been scarce in the literature. Initial research in this area, conducted
by Sander et al. (2007), reported that caregivers who are either Black or Hispanic have reported

22

lower income, lower education attainment, as well as caring for an extended family member
when compared to White, non-Hispanic caregivers. Furthermore, Black and Hispanic caregivers
are more likely to report subscribing to traditional caregiver ideology such as family and cultural
traditions. Such engagement has been postulated to have greater association with the
development of distressful symptomology due, possibly, to the adoption of added responsibilities
(Nabor, et al., 2002; Sander et al., 2007). The reported relationship does not hold true for White,
non-Hispanic caregivers. Lastly, non-White caregivers utilize emotion-focused coping skills at a
greater rate than White, non-Hispanic caregivers do. Despite this difference in utilization, the
two groups do not differ on measures of emotional distress (Sander, et al., 2007).
Positive consequences. Although most symptomology or sequelae following TBI are
considered negative, Wells, Dywan, and Dumas (2005) hypothesized that the act of caregiving
and the adoption of the caregiving role may result in a surge of positive feelings within the
caregiver. This finding is attributed to the possibility that “families feel good about being able to
provide care to their injured family members despite the added stresses associated with
caregiving” (p. 1113). It is hypothesized that feelings of satisfaction occur independently of
those feelings of dissatisfaction or challenge that may also arise. Perlesz, et al. (2000) report that
between 51%-80% of primary carers perceive family satisfaction with no associated feelings of
psychological distress. A TBI may result in positive changes, which leave the family system
more satisfied, such as with perceived positive personality change (Adams, 1996; Fahy, Irving,
& Millac, 1967).

23

Family needs following traumatic brain injury. Bond, Draeger, Mandleco, and
Donnelly (2003) concluded that the family has needs within four areas while their family
member is engaged in in-patient care: the need to know, the need for consistent information, the
need for involvement in care, and the need to make sense of the experience. The need to know
specifically refers to the readily available access that the family has to medical staff and the
degree to which they believe the staff are being truthful in what answers they provide (Lefebvre
& Levert, 2012). Due to the many different medical professionals that the family may meet
during an in-patient stay, the information they receive may vary by person. Therefore, there is a
strong desire for consistent information pertaining to their family member with the head injury.
A strong desire has also been expressed by families to be involved in their loved one’s care. Not
only can the family attest to changes in the loved one, but they can also assist with care to lessen
the burden on orderlies and nurses. Lastly, the experience of a TBI in a loved one can arouse
significant emotional distress. The aforementioned themes compound this distress while the
family attempts to make sense of the situation that they are as a result of the injury. In
responding to the needs surrounding information delivery, practitioners should seek to reduce
emotional distress.
The literature has provided evidence that family needs continue to go unmet for several
years following hospital discharge (Albert, et al., 2002; Stebbins & Leung, 1998). Family needs
expand from focused acute medical and professional supports during the first two years, to a vast
range of needs that includes community supports, financial resources, caregiver supports, and
health information (Kosciulek, 1995; Stebbins & Leung, 1998). McLennan, et al. (1996)
reported that families’ largest need is for information concerning understanding the treatment,
drugs administered, and pain management both while the member with the TBI is in the hospital

24

and once they are discharged. While the family member is being treated in-patient, families
express a high concern with financial resources, including insurance. These learning needs and
financial concerns continue to be expressed six or more weeks following hospital discharge
(McLennan, et al., 1996; Murray, et al., 2006). Other reported needs include finding and
evaluating providers, hospital discharge support, employer support for the family caregiver, and
life planning assistance (Lefebvre & Levert, 2012; Rotondi, et al., 2007; Sinnakaruppan &
Williams, 2001).
Attention to the needs of the family is crucial for family development, coping, and
adaptation. It has been proposed that the family often has informational, networking, and
support needs highly similar to the individual with the TBI (Leith, et al., 2004). Focus is
traditionally on the individual with the injury, often leaving family members to perceive
significantly unmet needs, both during and following hospital treatment. Sinnakaruppan and
Williams (2001) postulated that this position often results in family members perceiving a lower
overall quality of life and greater psychiatric morbidity.
Family coping and adaptation to traumatic brain injury. It has been reported that
over half of all family carers exhibit high levels of strain associated with caring for a family
member with a TBI (Mitchley, et al., 1996). As previously discussed, having a person who has a
TBI in the family can affect the family system emotionally, socially, and financially. As it is
highly likely that the family’s ability to cope emotionally and practically to the individual with
the head injury directly impacts the brain-injured person, research in this area is pertinent
(Dausch & Saliman, 2009; Oddy & Herbert, 2003).

25

Oddy and Herbert (2008) reported that not only do family members become increasingly
socially isolated following TBI onset, but also that individual member response can vary based
upon gender as well as the particular role they serve in the family system. Purportedly male
caregivers tend to appear more emotionally detached and often take on the position of advocating
and organizing services rather than be directly involved with day-to-day care. Previous research
has also concluded that male caregivers are more likely to report their distress in terms of anger
and fatigue, and they experience these emotions more so when caring for a female member with
a TBI (Gervasio & Kreutzer, 1997; Perlesz, et al., 1999). As it pertains to roles played within the
system, parents of the person with the TBI tend to worry greatly about what will happen to the
adult child when they are no longer able to care for him/her (Knight, et al., 1998), whereas
spouses or partners are more concerned with the change in role from equal partner to parent
(Gosling & Oddy, 1999). Drastic change in roles contributes in part to the high divorce rate for
couples that include a person with a TBI, which reportedly range from 30% (Stilwell, Hawley, &
Stilwell, 1997) to 50% (Wood & Yurdakul, 1997), and increase with the time since injury (Oddy
& Herbert, 2008).
Families use several successful coping and adaptation methods. Kosciulek (1994)
identified two predictive variables of family adaptation to head injury: family tension
management and positive appraisal. Family tension management refers to the ability of the
family to identify when there is building pressure as a result of the newfound roles, and to react
appropriately. Examples of appropriate reactions include taking time for oneself away from the
person with the TBI and openly expressing one’s feelings. Positive appraisal involves the family
redefining stressful events related to the member with TBI as manageable. In doing so, the
family is less likely to catastrophize the situation, and is more likely to successfully adapt to their

26

new way of life (Kosciulek, 1997b; Kosciulek, McCubbin, & McCubbin, 1993). Later, the
variable of affect/behavior was identified as a predictor of family adaptation in that “the
accumulation of demands on a family system resulting from the brain injured member’s affective
and behavioral functioning, or family stress, was related to general family system functioning, or
family adaptation” (Kosciulek & Lustig, 1998, p. 11). Families found to be balanced across
scales of cohesion and adaptability are reported to exhibit greater overall functioning and more
positive communication skills than those families who are identified as an extreme type
(Kosciulek, 1996).
Family functioning prior to the onset of TBI aids in the identification of certain qualities
of the family baseline interactions and functioning, which have been reported to be predictors of
adaptation (DePompei & Williams, 1994; Elbaum, 2007; Kosciulek, 1997b). Kosciulek (1997b)
postulated the existence of a relationship between family schema and family adaptation. Family
schema refers to the family’s set of beliefs, goals, priorities, values, and expectations in
relationship to each member and the greater society. Similar to the positive appraisal variable
discussed above (Kosciulek, 1994), if a family does not value ideologies such as connectedness
and the value of a human being with a disability, they are less likely to adapt positively to the
presenting situation.
Family types have also been researched as this reportedly aids in the explanation of
family functioning in lieu of stressful life events. Kosciulek (1995) reported that there are five
family types relevant to TBI: unpatterned, fragile, pliant, regenerative, and vulnerable. The
unpatterned family type places little emphasis on family interaction and may appear
unconnected. Furthermore, this type is also characterized by highly independent family
members, erratic discipline patterns and a low level of familial loyalty. Fragile families also lack

27

familial loyalty and closeness, and are further characterized by poor communication and are
resistant to compromise or change. It is reported that this type may experience most, if not all, of
the difficulties associated with having a family member with a TBI. The pliant family type
functions generally well, with the exception of communication difficulties. Such difficulties
include providing double messages and conveying criticism, subsequently influencing the
family’s ability to adapt and to be viewed as a team. Regenerative family types appear to
function effectively to the chronic stress produced from having a member with a TBI. Coping
skills utilized by this type may include cultivating trust and maintaining calm in the wake of
adversity, subsequently leading to a sense of unity. Lastly, vulnerable families display a
considerable amount of conflict stemming from poor information exchange, strong emotional
response to the injury and stress produced by it within the family, and task assignment problems.
Vulnerable families have been suggested to utilize negative coping skills such as blaming others,
and getting outwardly upset (McCubbin & McCubbin, 1989).
Three coping dimensions for families of an individual with a TBI are identified in the
literature. The dimensions are individual-to-family versus family-to-community coping, familyrespite versus head-injury focused coping, and cognitive versus behavioral coping (Kosciulek,
1994; Kosciulek, 1997b). The first dimension pertains to the ability of the family to move
beyond the family system and access the resources available in the community. The second
dimension speaks to the ability of family members to care for himself or herself throughout the
process of caring for the individual with the brain injury. The cognitive versus behavioral coping
dimension refers to the family members’ ability not only to reframe the injury, but also to engage
in behaviors that reflect this reframe.

28

A later replication and extension study identified two dimensions by which the family
copes with head injury: social support versus cognitive coping, and head-injury-focused coping
versus family tension management (Kosciulek, 1997b). Collective data from the two studies
promote the idea that families use a variety of coping strategies when addressing issues
surrounding the member with a TBI. Through this suite of research, coping strategies have been
posited to vary, depending on the region in which they are learned and executed.
Poor adaptation can partly be attributed to a lack of long-term resources available for
family members (Kosciulek & Pichette, 1996). Often, support for the family ends when the
person with the TBI leaves acute care and is released to the family for ongoing, home-based care,
resulting in a struggle to successfully adapt to this change in the family system (Kosciulek &
Pichette, 1996). Maladaptive responses, including rumination and negative self-re-evaluation,
are also prevalent with family members of a person with a TBI (Mitchley, et al., 1996).
The relationships that the family has with the rest of the care team can directly influence
the adaptation process (Lefebvre, Pelchat, Swaine, Gelinas, & Levert, 2005). As discussed
earlier, many traditionally trained medical professionals have not had the experience or the
preparation for working collaboratively with the family. There is a strong argument found
within the literature, however, that emphasizes the need to see past convention and to adapt to
the processes which best serve the patient and the family. Not only can this change in approach
produce greater rehabilitation outcomes for the patient, but research has reported that it also
provides the family with the resources to “find solutions for managing their issues of concern”
aiding in the overall adaptation process (Sohlberg, et al., 2001, p. 505).

29

Family integrated care. Research has reported that the acknowledgement of support
system involvement is not the only step necessary for a successful partnership between the
familial support system and practitioners. Redpath et al. (2010) stated that the way in which the
individual acquired the TBI could result in prejudicial attitudes and stigma from practitioners.
That is, if practitioners believe the individual to have had a role in the acquisition of their TBI,
whether through risky behaviors or alcohol or other drug use, they are more likely to express
negative attitudes. The authors further explain this by also identifying a negative correlation
between helping behaviors and prejudicial attitudes; as prejudicial attitudes increase,
practitioners are less likely to have helpful intentions toward that individual. Although these
findings vary based on profession and number of years in the profession, they evoke concern
when seeking universal quality care for all persons who acquire a TBI.
These prejudicial attitudes also play a role when it comes to the time needed for
practitioners to engage in rehabilitation referral decision making. Foster, Tilse, & Fleming
(2004) reported that practitioners consider both clinical and non-clinical factors concurrently
when engaging in the process of decision-making. Of note specifically are functional status, age,
and family involvement. Most clinicians report physical and cognitive functioning as the
primary consideration when deciding upon post-acute referral; however, the age at acquisition
also factors into what recommendation is provided. The older the individual was when they
acquired their TBI, the less likely they are to be referred to post-acute rehabilitation services.
Clinicians cited co-morbidities, less chance of spontaneous rehabilitation, and lowered resiliency
as reasons for this trend (Foster, et al., 2004). The presence and ability of family members to
serve as caregivers and advocates also impact the decision making process, with many clinicians

30

being more apt to release their patients into family care if they feel they are willing and that the
burden of this care will not be too cumbersome.
Collaborative partnerships between practitioners and family members have recently
emerged in the literature as the direction in which palliative care should continue to develop a
foundation. Involving the family in treatment planning and the provision process has been
reported to have a significant impact on the rehabilitation process; hospital stays are shortened,
the client’s level of comfort is maximized, and the chance of relapse is reduced (Horwitz,
Horwitz, Orsini, Antoine, & Hill, 1998; Lawlor & Mattingly, 1998). The inclusion of family
members in the care team provides an advocate for the client, in addition to individuals who can
speak to the client’s biopsychosocial history, preferences, habits, and other pertinent information
to the treatment planning process, and, as caregivers, an active partner in care provision. The
inclusion of family in the care team has further been reported to enhance the comfort of the
person with the TBI, as well as reduce stress and worry, due to the family being more supportive
and satisfied with the care the client is receiving (Horwitz, et al., 1998). Groswasser (1995)
postulated that without family involvement, it is near impossible to rehabilitate those individuals
with a severe TBI.
Previous models for collaborative care were identified in two distinct studies. A social
work liaison program was proposed by Albert, et al. (2002), where increased access to
information and referral resources, as well as counseling, specifically for family members who
care for an individual with a TBI, were made available via telephone contact with social
workers,. Resources were made available to family members at and following discharge from
acute hospital care. Results were promising, indicating that caregivers who received these

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services were more likely to report significantly less burden and greater satisfaction and mastery
with caregiving tasks.
Moore Sohlberg et al. (2001) also proposed a preliminary model for collaborative care,
which includes three overlapping phases: the initial interview, goal selection, and the monitoring
of change. In the first phase, practitioners are encouraged to learn about the family and to
become familiar with their unique situation. The research in this phase underscores the
importance of strong interpersonal communication skills, and how these skills are necessary for
success in the following two phases as well. In the goal selection phase, families are empowered
to discuss issues, strengths, and observations that they have encountered and how family life has
been affected by the injury. The practitioners then utilize these reports and the family members
as experts on the person with the TBI, in collaboration with their professional knowledge, to
generate options regarding which areas to target in the rehabilitative care process. The final
stage, monitoring change, is characterized by utilizing the family and the person with the TBI to
implement any strategies developed in the previous stage and to monitor any changes, struggles
or successes that occur as a result of the strategy implementation. Weekly meetings with the
care team are recommended to evaluate the progress made and to develop new strategies if
necessary.
In order to address concerns related to caregiver burden, such as lack of educational
opportunities, DePompei and Williams (1994) reported that families need to be
uncompromisingly accepted on the care team, and to be provided with meaningful interactions
while on that team. As team members, families can serve in several capacities: information
providers, active participants, advocates, expert communication partners, and vision developers.
Active involvement in the case management process throughout the life cycle also aids in the

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minimization of poor adaptation to caring for an individual with a TBI. It is important that the
medical staff have an “understanding of why family members react as they do and of the
possibility and causes of friction between staff and families” to inform behaviors and actions
they may take which could jeopardize the partnership (Oddy & Herbert, 2008, p. 443). Further,
due to institutional environment and the traditional manner in which practice is informed, it is
important that both medical professionals and family members realize that this collaboration will
be difficult at first to formulate, and that they may need to adjust the ways in which they proceed
with family integrated care (Lawlor & Mattingly, 1998; Sohlberg, McLaughlin, Todis, Larsen, &
Glang, 2001). In order to successfully make this adjustment, a redefinition of practice may need
to be developed and implemented.
With post-acute care needs not being met by community resources, it becomes ever
important to utilize the individual’s support system, often comprised of family members, friends,
and/or other loved ones. These resources often serve as direct service providers, evaluators, and
caregivers; however, these functions continue to go under or unutilized by practitioners. Turner
et al. (2007) concluded that the family plays a significant role in the transition process of
individuals with TBI from the hospital back into the home and general community.
Acknowledging the rehabilitation literature, which strongly supports the integration of family
and/or support system involvement into the rehabilitation process of individuals with a TBI, it is
then imperative to analyze how such an injury can affect the family unit and possibly mediate
later involvement.

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CHAPTER 3
METHOD
Research Design
The purpose of this study was to collect, summarize, and report data from the perspective
of individual family members regarding their experiences of having an adult family member with
an acquired TBI, within three years of acquisition. The following research question was
developed and applied to address this purpose: How do immediate family members describe, and
what is the meaning of, the experience of having an adult family member with an acquired TBI
within the first three years? This question was addressed using a phenomenological qualitative
design that consisted of interviews, field notes, and informally collected demographic
information. The underlying theme of phenomenology is people making meaning of their
experiences; this meaning is contained within their stories (Moustakas, 1994). The aim of the
interview was to bring out the individual and shared meanings by having family members share
their personal experiences following their family member’s TBI acquisition. This methodology
was chosen because the research question sought to identify the meaning that was derived from
each individual experience.
According to Creswell (2013), phenomenological research “describes the common
meaning for several individuals of their lived experiences of a concept or a phenomenon” (p. 76).
Creswell further described phenomenological research as capturing “what all participants have in
common as they experience a phenomenon….to reduce individual experiences with a
phenomenon to a description of the universal essence” (p. 76). Given the significant impact of
TBI on a family, additional data are needed to guide state and national TBI rehabilitation service

34

systems, specific traumatic brain injury rehabilitation programs, and individual practitioners, so
that they may more effectively meet family coping and adjustment needs.
Participants. The experience of interest in this study was that of having an adult family
member acquire a Traumatic Brain Injury (TBI). Due to the exploration of experience, a
phenomenological approach was used. The literature in phenomenological methodology cites 78 as the optimal number of participants in a study (Moustakas, 1994; van Manen, 1990),
although sample sizes have ranged from one (Dukes, 1984) to 325 (Polkinghorne, 1989) in
previous research. Phenomenological research involves studying a small number of participants
through extensive and prolonged engagement, in order to identify patterns and relationships of
meaning (Creswell, 2013; Moustakas, 1994). Given the depth of the interviews, a large amount
of data may be collected without need for a larger number of people to be involved, if the
participants talk at length about their experiences. This study sought to capture the essence of
what family members experienced within three years of another immediate family acquiring a
TBI through the interviews of six individuals.
Six participants, representing four families, were recruited from a mid-Michigan brain
injury rehabilitation facility. Two mother/daughter dyads were included in the within the total
number of six family members. Criterion sampling was used to ensure that all participants have
experienced the phenomenon being studied (Creswell, 2013). Criteria for participant inclusion in
this study included: (a) the individual had an immediate, adult, family member who recently
(within 3 years) experienced a TBI; (b) the individual was at least 18 years of age at the time of
the study; and (c) the individual had routine contact with the family member who has a TBI, both
prior to and following acquisition. A 3-year inclusion window was applied in an attempt to
control for the development of coping mechanisms and the influence of counseling on the raw

35

emotion of the experience. For the purpose of this study, the definition of acquired brain injury
used in Gan et al. (2006) was applied:
a) damage to the brain which occurs after birth and is not related to: i) a congenital
disorder, ii) a developmental disability, or iii) a process which progressively damages the
brain (i.e. Pick’s disease, Alzheimer’s disease, multiple sclerosis); and
b) the damage may be caused: i) traumatically (i.e. motor vehicle collision, fall, assault,
sports injury) or ii) through a medical problem or disease process which causes damage
to the brain (i.e. anoxia, aneurysm and vascular malformations, brain tumours,
encephalitis, meningitis, stroke with cognitive disabilities). (p. 589)
Lastly, the adapted Romano (1989) definition of family states that “…ties of kinship (i.e. parent,
children, extended family of origin); marriage (i.e. spouse, ex-spouse, family of procreation)” (as
cited in Brooks, 1991, p. 156) was utilized to identify family members. Let it be noted that the
present study left out Romano’s (1989) partial definition of family, which included “sustained
intimacy (i.e. close friends, lovers, and so forth)” (as cited in Brooks, 1991, p. 156).
Procedure. The present study required approval by the administration of the Michigan
State University Social, Behavioral, and Education Institutional Review Board (SIRB).
Following approval, the researcher reached out to a mid-Michigan brain injury rehabilitation
facility. The researcher, having previously gained permission to advertise in the facility,
proceeded with advertising and presented the study twice to a support group ran by the facility.
A local chapter of the Brain Injury Association (BIA) also allowed the researcher to present the
study and recruit for participants at a support group meeting. While attending the support group
meetings, the primary investigator provided a brief presentation of the study and explanation

36

related to study procedures and objectives, in addition to sharing her personal experience of
having a family member with a TBI. She answered questions pertaining to the study, provided
contact information, and discussed concerns. Copies of the Research Participant Information
and Consent Form (Appendix A) and a copy of one or more of three different recruitment flyers
were provided to individuals for their information. The researcher asked that those participants
who were interested either sign up for the study prior to leaving the meeting or contacted her via
the information located on the recruitment flyers or Information and Consent Form.
Once participants were identified, the researcher arranged to hold the interviews in
appropriate environments where the individual participant felt encouraged to share their personal
story. An appropriate location was determined based on proximity of the setting to the
participant, how comfortable each participant felt in a location, noise and other distractions of the
surrounding environment, and level of privacy and ability to keep confidentiality within the
environment. Appropriate meeting locations included a conference room at the mid-Michigan
brain injury rehabilitation facility and a meeting room on the campus of where one participant
went to school. Two interviews were held by phone due to distance being an issue and the
inability to coordinate schedules. Upon beginning in-person interviews, the researcher discussed
the informed consent procedure with the participants, by verbally describing the purpose of the
study, participant rights, and confidentiality. The researcher clarified that the recounting of this
experience has the potential to evoke strong emotions and may be uncomfortable, and that
resources are available should the participant wish to seek counseling. The researcher then
explained that the conversations would be confidential within normal limits, and that any
reference of intent to self-harm or abuse/neglect of the adult in care would be reported in
accordance to the law. The Research Participant Information and Consent Form (Appendix A)

37

was given to the participant for them to read. A copy of the information form was provided to all
in-person interview participants. Upon the participant’s understanding and consenting to
participate, the researcher began the interview. For phone interviews, Research Participant
Information and Consent Form (Appendix A) was read verbatim to the individual and
subsequently mailed via post mail for their records.
In-depth interviews were held with each participant at the arranged time, date, and
location. Each interview lasted between 40-60 minutes, dependent on the participant. The
purpose of each interview was to (1) ensure the participant meets the study’s inclusion criteria,
(2) explain informed consent, (3) establish rapport, (4) gather information regarding each
individual experience, and (5) provide a small gift card for a local grocery store as incentive for
their participation. All interviews were audiotape recorded. In addition, a field log was kept and
written by the researcher throughout the data gathering process, in order to document key
phrases that each participant said. The field log was also used to provide a detailed account of
the researcher’s observations, thoughts, feelings, experiences, and perceptions throughout the
research process, for later use in the analysis phase. Following each interview, the investigator
listened to each recording. The recordings were then labeled with an assigned pseudonym and
transcribed using Dragon Naturally Speaking Premium Edition (Version 12) [Computer
Software]. Following the initial transcription, the researcher read through the documents with
the recordings to ensure that there were no errors. These documents were then printed,
catalogued, and analyzed. Transcriptions were read multiple times, both alone and with the
corresponding field notes for each interview.
Pre-understandings were identified in the first phase of analysis. Laverty (2003) states
that “pre-understanding is the meanings or organization of a culture that are present before we

38

understand and become part of our historicality of background”, or background in the world (p.
8). The researcher identified passages, words, and emotions from each interview that connected
with her own pre-understandings. This included the emotional overtone of the piece as well as
the choice of wording. Themes, the broader concepts that were represented in the account, were
then developed from each interview. Finally, a bounding was derived from the themes and put
into a single concept so that the personal account was presented accurately in its entirety.
The audio recordings, printed documents, and field notes will be retained for a minimum
of three years. This data has been stored in a secured and locked location in the office of the
researcher. Any information entered into a computer has been secured through password
identification, Norton Anti-Virus and Windows firewall protection. Only the principal
investigator, Dr. John Kosciulek, and researcher Erica Wondolowski has access to the data.
Instrumentation
Data for this research has been generated through a single interview for each of the six
participants. Each interview used one primary prompt and was conversational in nature
(Creswell, 2013; Glesne, 2011). The Interview Prompt (Appendix B) was used to maintain
consistency across interviews. Sub-questions or probes were used to uncover assumptions and to
make explicit what the person speaking may have left implicit, as well as to elicit in-depth
narrative descriptions about the participants’ experience(s) (Rossman & Rallis, 1998).
Interview guide. The Interview Prompt (Appendix B) was developed based on the
theoretical framework of the proposed study. Attention was paid to non-verbal cues, including
descriptions of facial expressions, posture, gestures, behaviors, and tones of voice, expressions,
and behaviors with symbolic meaning, as well as the researcher’s own feelings during the

39

interviews. In having family members tell their stories, they were able to state what is
meaningful to them, and develop rich descriptions of those events. The content and structure of
the Interview Prompt (Appendix B) was developed from a variety of sources, including:
1. The empirical and conceptual TBI, family involvement, and Ambiguous Loss Theory
literature.
2. Qualitative literature pertaining to the development of phenomenological studies.
3. The investigator’s personal experience with an adult family member with a TBI.
4. Review and input by rehabilitation, family and qualitative experts.
Participants were not given a copy of the Interview Prompt (Appendix B); however, a copy was
placed between the researcher and the participant during in-person interviews in the event that
they needed to read the question as it is written. The researcher used the following prompt to
establish consistency between the interviews and focus participants on the experience as it was
lived: “Can you describe to me what your initial thoughts, experiences and reactions were when
you first began to see the impact the Traumatic Brain Injury (TBI) had on your family member?”
The prompt was posed to all participants, although individual responses determined the use for
further, more pointed, lines of questioning.
Bracketing, validity and reliability. Data was collected and analyzed from
conversational interviews that focused on the experience of having a family member who
acquired a TBI. For the analysis of this study, both a phenomenological and an open-coding
theory were used. Open coding was important for identifying similar themes within the data, and
for confirming or challenging ambiguous loss theory as it applies to the acquisition of TBI within
the family system (Corbin & Strauss, 1990). Audio recordings were transcribed and validated by

40

the researcher. This process consisted of reading the transcriptions while listening to the audio
recordings, to ensure accurate transcription. Any corrections were made at that time.
Analysis of the transcripts implemented a modification of the methods developed by
Moustakas (1994). The researcher began by describing her own experience of the phenomenon
as a way to bracket her personal experiences and allow focus to then be directed to those of each
participant. The researcher then analyzed each account for passages, words, and emotions from
each interview that connected with her own pre-understandings both with and without the
corresponding field notes. The field log provided an opportunity to survey for applicable
nonverbal communication and emotions elicited during the interviews. The researcher continued
analyzing the transcripts until such time when a list of non-repetitive, non-overlapping
statements had been generated. Key concepts expressed by participants in various different
symbolic forms were made into themes. Each theme was compared to other identified themes,
within and across interviews, to investigate similarities, differences, and general patterns. The
compiled themes were then bounded in order to represent the cumulative experiences of the
family members. It was the aim of the researcher to allow for pre-understandings, themes, and
boundings of the data to emerge through analysis, rather than creating them prior to data
collection.
Giorgi (1988) encouraged hesitancy when trying to apply conventional definitions and
evaluations of validity and reliability to studies employing phenomenological methods. Derived
from philosophical roots, this methodology operates under the provision of key features, the first
of which is that consciousness is viewed as intentional; objects appear within and because of
acts, but they also transcend those acts. Secondly, those objects that transcend acts are real
objects. There are also ideal objects, which cannot transcend acts, such as essences and ideas.

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Lastly, phenomenology is “a philosophy of intuition” (Giorgi, 1988, p. 170). Intuition, being
akin to the presence of meanings, consequently becomes evidence. To preserve this evidence,
the researcher engages in phenomenological reduction where one brackets what they know and
refrains from explicitly conveying that what is given is as it appears.
With the phenomenological method, validity is accepted on the premise that the
phenomenon is well substantiated within the study. Giorgi (1988) stated, “If the essential
description truly captures the intuited essence, one has validity in a phenomenological sense” (p.
173). Furthermore, it is through the ability to replicate the essential description that an
individual achieves reliability in a phenomenological study (Giorgi, 1988). In order to properly
and accurately achieve reliability, the researcher needs to be specific about what the essential
features of the phenomenon being studied are, including imagined and experienced presences.
Husserl (as cited in Giorgi, 1988) discussed three distinctions between conscious acts:
signifying acts, fulfilling acts, and identifying acts. Signifying acts are those acts that orient the
consciousness towards the world and allow the individual to name an act based upon the
constitution of meaning. Fulfilling acts complement signifying acts by adding symbolic or
sensory fulfillment. Lastly, identifying acts are those acts that declare that the fulfillment acts
meet the criteria of meaning ascertained in the signifying acts. Through the three different acts,
researchers are able to more accurately explore the studied phenomenon.

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CHAPTER 4
RESULTS
The purpose of the present study was to explore the experiences of family members of adults
who have had recently acquired a traumatic brain injury (TBI). Few studies have examined the
experiences of immediate family members of adults with a TBI. A phenomenological study was
best suited for this line of inquiry pertaining to the family members’ lived experience. The data
was analyzed in accordance with those outlined by Moustakas (1994). The audio recording of
each interview was transcribed by the researcher using Dragon Naturally Speaking Premium
Edition (Version 12) [Computer Software]. Accuracy was ensured by reading each transcript
along with the corresponding audio recording.
Transcriptions were read multiple times, both alone and with the corresponding field
notes for each interview. Pre-understandings were identified in the first phase of analysis.
Illustrated in significant statements, quotations, and phrases, the pre-understandings are
important to acknowledge and identify, as they are “not something a person can step outside of
or put aside, as it is understood as already being with us in the world” (Laverty, 2003, p. 8).
Themes were subsequently developed from this data. After extrapolating the emerging themes
from each document via this process, the themes were then examined across all of the
documents. Across the six interviews, six major themes emerged as common characteristics of
the experience of having an adult family member with a TBI. Those themes are: (1) an abrupt
onset requiring necessary and rapid response, (2) the multiform manifestations of fear, (3) the
significant role changes within the family system, (4) the diverse practices for emotional

43

expression and protection, (5) the depth to which grief is experienced, and (6) the immutable
alterations to established plans for the future.
To maintain the humanistic integrity of the phenomenological method through the
presentation of results, all participants were assigned pseudonyms. Following each theme, a brief
interpretation and analysis of the experiences will be provided. Two of the four
phenomenological lifeworld existentials will be examined: temporality, or lived time, and
relationality, the lived human relations (Rich, Graham, Taket, & Shelley, 2013).
An Abrupt Onset Requiring Necessary and Rapid Response
For each family member, the sudden impact of the TBI combined with the need to act
immediately in response to the situation roused multiple emotions. Instantaneously, the family
members attempted to understand the gravity of the situation at hand, as well as the prognosis. It
is important to note that for Participants Michael, Andrea, and Jessica, this shared sense of
urgency and need to react occurred despite an asymptomatic period of time between the accident
that caused the TBI and TBI symptom expression.
Andrea, a then 51 year-old mother of three adult children whose 55 year-old husband
incurred a TBI in 2012 from a fall at work, shared that the beginning of this experience was
“devastating” and professed that she was “an emotional wreck”. She continued to state:
I was panicking. I actually fell to the ground because I thought he was gone. They
[hospital staff] got him in a room. His respirations were eight. They tubed him in front
of me. They did everything in front of me. And all the while asking me what
medications he was on. My mind my spinning…It, it was like...you, you didn't really

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have time to think because everything was going boom, boom, boom, boom, boom,
boom, boom.
Despite having a 15-year-career as a licensed practical nurse, seeing her husband undergoing
such treatment was jarring. The simultaneous processes of attempting to understand the status of
her husband’s health and needing to provide accurate information quickly overwhelmed Andrea.
Jessica is one of three children born to Andrea and her husband. 35 years-old at the time
of her father’s fall at work, she stated:
It was just really scary, so. Just because we didn't know, and honestly the hospital he was
at, they couldn't tell us a whole lot either, so...I...It just wasn't...they didn't know where he
was going to progress to. And it wasn't...they can't give a prognosis too far...You know?
And it's just like, “Okay well so are you telling me one day he will be back to normal?
Are you telling me that one day, you know, he'll just be a vegetable? Are you...what are
you telling me?”
In an attempt to make sense of a whirlwind situation of which there was little previous
experience or knowledge Jessica, like the five other participants in this study, sought answers
that were not readily available due to the capricious nature of a TBI.
Ruth, a then 43 year-old mother of three, shared similar emotions regarding the moment
in 2012 when she found out that her 46 year-old husband had been in a car accident that required
immediate medical care. She recalled emotional states of confusion as her husband called her
and said that she would need to pick up their son from football practice. She shared how she
asked him “what’s going on? Tell me what is happening” because her husband was supposed to
be with their son. Immediately she felt a sense of “panic” thinking that something had happened

45

to her son at football practice. Hearing the ambulance in the background her imagination went
wild. It was when her husband stated that he wanted Ruth to “come and find [him]...somewhere
downtown” and pick him up, that she told her husband to put the ambulance driver on the phone.
Politely, she asked the ambulance driver to bring her husband to the hospital and stated that she
would meet him there. The simultaneous combination of needing to coordinate the pick-up of
her son, process what had happened to her husband, speculating the level of injury and needing
to arrange for her oldest child to watch the baby, had Ruth upset to the point that she had asked a
neighbor to drive her to the hospital. Being away from her husband during the accident and
hospital admission, she could only guess what his status or depth of injury was.
Michael, the oldest of three children and 26 years-old when his father sustained a TBI in
an automobile accident, had previous personal experience with brain injury from the multiple
concussions he sustained while playing various sports and a car accident after which he required
inpatient care. He felt that his prior experience with brain injury and brain injury rehabilitation
had aided in his reaction to his then 46 year-old father’s car accident in 2013. Michael revealed
the pressure he felt to make the right decisions with his father’s care quickly:
But this was something, like I said, that was very sudden...was a very sudden onset. And
was something that was....in my experience, with mine and what I then heard from the
friend of mine is that it was something that required care very quickly or the quicker you
got care the easier it was to repair the connections and stuff like that. So it was one of
those things where I put in a lot of time and effort into making the right choice and trying
to find the right situation and the right place and the right care for him very quickly.
In order to potentially prevent any greater permanent damage, Michael felt that he had to
consume, assess, and apply an abundance of knowledge and research pertaining to TBI. The

46

encumbrance of this responsibility was one he was able to bear, but also remained a critical
process in his experience.
Tiana was 22 at the time of her then 60 year-old father’s car accident in 2012. Her uncle
who had also been in the car with her father was missing from the scene of the accident.
Immediately notified by her grandmother over the phone, she recalled:
…I just remember getting off the phone, [speaking to cousin] “We don’t know where
your dad is. My dad is at Middlesex hospital. We have to go. We have to go to the
hospital. He is in critical condition. Like, he might die.” Like, I just remember freaking
out. We’re all panicking. We get in the car and we just took off to Middlesex.
Unbeknownst to Tiana or her family at the time, the uncle in question had been transported to a
different local hospital after being pronounced dead at the scene.
Participants Michael, Tiana, Andrea, and Ruth shared similar concerns regarding getting
and/or attending to their injured family member as soon as possible. Due to other circumstances,
Participants Jessica and Allison were not present immediately following each of their fathers’
hospitalizations. All participants, however, expressed the need to ascertain as much information
as possible regarding the status and prognosis of their family member expeditiously. In doing so,
the participants would be able to better brace for what was to come, inform any decisions that
had to be made pertaining to a course of treatment for their family member, and to dissolve the
ambiguity that they now found themselves sitting in; not knowing whether or not their lives
would progress with their injured family member and if so, how. Unfortunately, due to the
complex nature of each individual’s TBI, this was not achieved until sometime after the initial
onset, if at all.

47

Interpretation and analysis. The account of time as it is experienced within the initial
period of TBI onset is one of hastening the anticipated future to the present. Rapid onset leads to
a whirlwind of emotions, thoughts, and fears within each individual. As they try to understand,
process, and be present in the moment, the family members had to simultaneously provide
information and decisions that could greatly affect their loved one. Individuals are presented
with a life or death situation that may have not been anticipated to occur for a number of years, if
at all. The experience of time had failed them in the sense that suddenly what was anticipated to
occur in the future is now their present. Previous knowledge or experience with TBI provided no
additional consolation. In fact, it added to the pressure felt to respond and decide both accurately
and expeditiously. As it became evident that each individual would live, the question became to
what extent? Unfortunately, no doctor could answer these inquiries. The family members
sought to make the future known but felt stuck in a period of waiting with which they were not
comfortable. This is not unique to TBI, but rather a shared experience for those who have
experienced any sudden, life-threatening event.
The desire for answers regarding the prognosis of the individual with the TBI also
reflected a need to understand how the established relationship would change. Seeing what was
once an autonomous spouse, partner, and provider dependent upon a variety of machines
including feeding tubes, ventilators, and medication dispensers is very distressing. Every action,
behavior and sound is analyzed as being either potentially promising or of concern. Every
opportunity for hope was seized, but each person remained cautiously optimistic. During periods
of coma, whether medically induced or otherwise, the family members sit in wait without much
indication of who will emerge, if at all. All existing family roles, known framework by which
they operate, and general rules of engagement are dependent on the outcome of this experience.

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The anticipation and concern is both palpable and intelligible. The relationality of this particular
stage of the experience is also shared with those who have experienced any sudden, lifethreatening event of a family member.
The Multiform Manifestations of Fear
While acting quickly to get to their family member’s bedside and answer all requests and
questions asked of them following the TBI onset, the uninjured family members begin to see the
depth of the sustained injuries and the role that they play in ensuring that their family member
with a TBI recover and return home. The emotion of fear was present for all six of the
participants in this study from the moment they were notified of the potential severity in their
family member’s condition. Although this emotional state lasted for different lengths of time for
each participant, a prominent emotion was emphasized multiple times through each interview
and central to each experience. Several distinct areas of fear were identified.
Fear of mortality. Tiana expressed how the loss of her uncle helped to inform her initial
reaction to her father’s condition:
I just remember being scared and worried. I mean, it made me just worried about my
dad. I didn’t want to lose him… And everyone was just worried because my uncle
passed away and we were just worried my dad was going to go with him. And we didn’t
want that to happen.
Her uncle’s death propagated the reality that her father was mortal. As she watched her family
grieve for the loss of this man, the actualization that she too, could lose her father became
poignant.

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A very palpable fear shared by Andrea pertained to concerns of her own aging,
deteriorating health and the possibility of severe injury. With tears running down her face, she
shared:
And you know, the only thing that scares me is if something happens to me. Something
happens to me, who's going to take care of me? I think about that. Before I had always
thought it would be him….Now I know he physically and mentally cannot.
Knowledgeable of how a TBI can magnify the probability of developing additional medical
maladies, Andrea is also fearful that her husband may develop dementia. As a licensed practical
nurse, she has worked with “a lot of dementia/Alzheimer’s patients” over her 15-year career.
She shared, however, that it is much different to take care of an individual you work for and then
go home, rather than to live with someone you love whose mental capacity and abilities are
deteriorating.
Fear of wrong choice. In addition to being confused at the beginning of this experience,
Ruth recalled being scared and unsure as to what she should do to help her husband, her family
and herself. She stated that her fear was followed by periods of anger as she tried to understand
why her family was disrupted by a TBI. Despite his personal experience with brain injury,
Michael shared how he was scared that he would possibly make a poor decision as it pertained to
his father’s course of care. “I'm not a doctor or an expert in the field or anything like that”, he
stated, “and I wanted to make sure that my choice were right.”
Michael stated that he is predominantly fearful of the possibility that his father will never
return to a state of self-sufficiency. He said that his father currently looks to him continually for
direction in life.

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Like, he's not...he’s going to look for direction the rest of his life…So that's the
biggest...the biggest loss is his direction. So....and it's, it's a lot of pressure back on me
because I have to provide him with a direction that's really going to make him happy but
he's not going to get hurt or die doing.
This feeling of pressure directly relates to the fear of making a wrong decision when
participating in the decision-making process of his father’s care.
Fear of the ultimate outcome. As the time since the onset of their family members’ TBI
increased, participants reported wondering how much progress their family member would make
in rehabilitation. Jessica shared that she and her husband have a close family friend who has a
TBI and is very low functioning, often needing a lot of assistance from his wife. When
prompted if she was concerned that her father would need the same level of care she stated, “We
were… we were very fearful of that.” As time passed, Jessica and her family found themselves
concerned. They would wonder if they, as a family, were going to move beyond a point in time
when, as she describes, her father was acting similar to a “toddler”. He has since progressed to
an “upper level teenager” in her opinion, citing several behaviors and attitudes similar to that of
her 13-year-old son. Andrea also found herself questioning, “Is my life going to be like this
forever?”
Fear of giving up. Behaviors that developed as a result of the TBI elicited concern and
fear in Allison, who was only 16 years old at the time of her then 46 year-old father’s car
accident in 2012:

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…He was smoking so much that, you know, smoking can help…it’s a big cause of lung
cancer and, um, I just have this fear that he is trying to hurt himself. And, you know, he
just wasn’t trying to get better.
The eldest child of Ruth, concerns regarding her father’s depression and his lack of self-care
became very worrisome for Allison. The hope she had regarding whether he would get better
were tarnished his behaviors which illustrated to Allison that he had given up on himself.
For Michael, his father’s lifelong resistance toward acknowledging weakness or deficits,
and remain “very contained and strong about things”, stirred up feelings of fear. He shared that,
“I was afraid that he would put that attitude into this and that's not really what he should have
been doing, in my opinion.” Michael did not want his father to pass over the evident changes
and difficulties that he was now facing, nor did he feel it would be appropriate for his father to
remain tightlipped regarding his emotions.
Interpretation and analysis. Fear is a multidimensional experience within the context
of a TBI in the family. Due to the unforeseen injury, the family is quickly faced with the
possibility that the injured member may not live. This subsequently stirs up thoughts and
emotions pertaining to mortality, including their own. For spouses of persons with a TBI,
thoughts quickly turn to the future and the anticipation of developing their own health concerns.
Their injured partner is no longer capable of providing for them as they may have once expected,
resulting in a necessary adjustment to the spouse’s plan and aspirations for the future. As time
progresses since the onset of the TBI and caregiving becomes a central role for the non-injured
spouse, the idea of no longer being able to provide care for their affected partner becomes
particularly troublesome. Fear and, to a lesser degree, guilt are infused into future plans. The
caregiving companion is scared about dying and leaving the injured spouse without their care,

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while also feeling pressured to remain alive and present for them until they pass away. For
some, it is firmly believed that no one can care for the spouse who has the TBI as well as they
have, resulting in additional emotional encumbrance.
Beginning immediately following the TBI onset, family members are required to make
decisions which have the potential to greatly impact the prognosis and ultimate outcome of their
loved one’s disability. For those unaware of the possibility of a TBI, the decisions begin when
debating whether to seek medical care after troublesome symptoms emerge. For others, decisions
begin at the hospital when members of the medical team turn to them for decisions regarding
care and intervention. Regardless of when the decisions begin, the pressure to act quickly and
accurately is great. Further convoluted by the intense emotional reaction that the family member
is having to the situation as a whole, periods of time seem to pass rapidly. While at the hospital,
the family may have few resources to inform important decisions, leaving them to speculate as to
the correct direction of care. As the individual with the TBI rehabilitates, the degree to which
their cognitive functioning has been affected becomes apparent to the family. Dependent upon
the severity of the TBI, family members could potentially be forever responsible for the injured
person’s daily decisions. Wives, husbands, or children may find themselves the custodial
guardian of the individual with the TBI. In a desire to honor the wants and needs of the affected
family member as the family knew them prior to TBI acquisition, these family members fear the
potential of a wrong decision that could have dire consequences.
Fear and sadness are both present as the family tries to predict the future. In an attempt to
see what their situation may look like several weeks or months from the initial onset, concerns
pertaining to the permanency of the situation as it is observed in the initial days and weeks since
TBI acquisition, begin to arise. The emotional and physical toll of having an immediate family

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member in the hospital is great and therefore renders any thoughts of situational permanency
frightening. This also holds true when the family member with a TBI is discharged from the
hospital and return home. Negative personality changes may become more pronounced over
time resulting in the considerable desire for the previous personality to return. Fear regarding the
permanency of the new personality also emerges. The negative personality changes may also
result in an inability to perform or engage in self-care and rehabilitation. Especially for children
of individuals with a TBI, this can be especially frightening if the affected parent engages in
risky behavior such as alcohol or drug use.
The Significant Role Changes Within the Family System
Beginning while the person with the TBI was still in acute care at a hospital or rehabilitation
center, the family began to identify the change in abilities of their family member following
onset. With the goal to preserve the family’s functioning, adjustments were made in order to
accommodate the person with the TBI back into the family once they were discharged. All
participants reported experiencing some change in their roles in relation to how they perceive
and interact with their family member with the TBI, as well as the family system as a whole.
Tiana, who was only 22 at the time and was one of the four adult children interviewed,
was called upon to help her grandmother care for her father following his discharge from the
hospital. She stated, “Well my Dad’s always been the one to kind of take care of me when I
needed him. And I had to step up and kind of take care of my dad. And just be there for him”.
She no longer has to take care of her father, citing that although he still lives with her
grandmother, that he has recovered “probably about 90% of the way”. Tiana still maintains a
very protective, almost maternal role, with her father. One example she shared pertained to how
she tries to protect him from spending too much money. Unable to work and currently receiving

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Social Security Disability Insurance (SSDI) benefits, she views this financial monitoring as
necessary.
Allison has seen significant changes in her role within the family. The oldest of three
children at 16 when her father sustained his TBI, she seeks to help out her mother, Ruth, where
her father cannot:
But yeah, I feel like I do a lot more. And I have been called mini-mommy. It’s like
“You do so much”. You know? “You’re driving them around, you’re…” And I’ll go
into the store, I’ll buy groceries. Or I’ll bring my brother to go buy something he needs
for school. I mean, I’ve been shopping with him for socks. You know, that’s something
that usually Mom does or Dad will do, but I, but my father can’t do that sort of thing. So,
yeah…
She stated that she had anticipated having to complete similar tasks when her parents got older
and she had moved out of the house, “but I hadn’t anticipated doing it like as a full-time job
basically, because that’s another full-time job that I have at home.”
In addition to her contributions at home, Allison is also currently completing a three-year
program that will provide her with an Associate’s degree and high school diploma, while holding
a job that varies between part-time and full-time. She disclosed, “I’m just 18 years old and here I
am taking care of my Dad. I’m taking care of my family, to some extent. You know? It’s like,
I’m just 18. I didn’t mean for it to happen now.” When interacting with her father, she stated
that she treats him “with a little more gentleness,” always giving him a “heads up” if she wants
to discuss something with him and consistently maintaining the intention of “try[ing] not to hurt
him too much” by overwhelming him with too many jokes or questions .

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Michael shared that his father’s continuous desire and need for help or assistance has
been a new experience in their relationship. He later stated that his newfound role in his family
and with his father is similar to that of a parent, explaining, “It'd be the same thing as my two
year-old sitting there, you know? And that's unfortunate to say but it's true.” Later he adds:
I see him as somebody who now I am overseeing and I am taking care of instead of...you
know, it seems like there was a role reversal of he was the parent, I was the kid to now
I'm the parent and he's the kid. It's....it's different.
He also feels that his family now relies on him for informed opinions and making arrangements
for his father’s care. In addition to expressing the pressure that this reliance puts on him,
Michael shared:
It makes me feel finally appreciated and vindicated that I'm doing what's right on my side
of it. But then I'm like...and this is...this is horrible to say...but it's like...you waited until
there was a problem to ask for my help. You know? You waited until you couldn't do it
anymore and now I'm good enough, kind of deal.
Feelings of anger, frustration and disappointment were present as Michael, now 28 years-old,
shared this insight regarding how their relationship has changed over the year and a half since his
then 46 year-old father sustained his TBI in a car accident.
Jessica affirmed similar sentiments regarding how her mother often seeks her out for
support and guidance since her father’s injury. Telephone calls have been as frequent as 12
times a day ranging from topics of general chitchat to resolving a fight between her parents.
Feelings of “stress” and being “overwhelmed” are often incurred from these recurrent
conversations. Jessica also acknowledged that if something should happen to her mother, that

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she and her family would need to become the primary caregivers for her father - a thought that is
also “overwhelming” to her. She continued to state that since her father’s accident when she was
35, she feels as though she is “parenting them to some extent” and that she had concerns that her
role will never revert back to what it was prior to her father sustaining a TBI at the age of 55
from a fall at work.
Ruth, one of two wives who were interviewed, appeared to exhibit defeat when she
admits that she has given up asking her husband for any help around the house:
…I would lose my patience with him because he was taking too long to, uh, you know,
do simple things that he could have easily have done. And I never...I stopped asking him
to do things because it was frustrating to, you know, that I would give him a list of things
to do and he wouldn't do them. So, uh, I started to just stop even asking.
She has taken on much of what her, then 46 year-old, husband used to do around the house and
stated that her patterns of living have changed significantly since his car accident.
Admitting to putting pressure on herself in multiple areas of her life, Ruth expressed a
sense of numbness that has taken her over emotionally. In order to maintain her family’s
happiness, however, she tries to create moments where her three children can let go from any
negative emotions and just have fun. She also continues to grow concerned regarding her two
sons and how their father will serve as a role model.
Transitioning from mother and wife to mother, wife, and caregiver has left Ruth feeling
overwhelmed. The demands on her to attend to her three children, while also taking her husband
to doctor appointments and maintaining a full-time job, prove very stressful on a daily basis. She
hesitantly shared that “it would be a lot easier to not have small children in the house” but

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emphasized that she would never want to be without her children. Further emphasizing the level
of change in her everyday life and the roles and responsibilities that she has assumed following
her husband’s accident, Ruth shared:
Sometimes it’s hard because it feels like the focus becomes the person with the TBI and
we're all held hostage to, uh, his needs and pains and everything else. So it's like, it's like
we all have, we all have to live our lives walking about carefully you know, around his
needs. And that's not necessarily a bad thing. Sometimes it is and sometimes it's not.
So, certainly our whole lives had to change to accommodate who he has become.
Her use of the term “hostage” illustrates the depth of her pain and anguish with the situation, as
well as the degree to which her and her family’s life was turned upside down in order to
accommodate her husband and his TBI.
Andrea emphatically detests the many changes in her role within the couple and family
system. Although she has come to accept the new roles that she has, she shared with
unequivocal intensity:
Like me carrying all the heavier part of the groceries? Heck no, I don't like that. Me
having to cook and plan every meal? Heck no, I don't like that. You know? Me having
to do dishes? I hate dishes. We had an agreement when we got married: he would do the
dishes and I would do the refrigerator, stove, counters, and things like that. Now I'm
doing the refrigerator, stove, counters and dishes. You know? No, I don't like it. But if I
don't do the dishes, he is not going to get up and do them…So, I've accepted the role but
yeah...there's....what I wouldn't give for him to just go up and do dishes one day.

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The household chores are just an example of the many areas in which she has had to learn to
manage in order to “pick up the stuff that he can't do”. As with Ruth, it is easier for Andrea to
do the tasks herself than to try to encourage her now 58 year-old husband to contribute. Prior to
his slip and fall at work, their marriage was characteristically shared in terms of chores and tasks,
with her husband taking on an estimated 60% of the responsibilities. Her husband’s lack of
initiative, which developed following the onset of his TBI, leaves Andrea having to plan out any
and all trips they may take, waiting on her husband who will not fix his own meals, fixing
various appliances around the house, and managing the upkeep of the vehicle.
As a self-professed “taskmaster” who is “now the full kit and caboodle”, Andrea finds
herself encouraging her husband to complete activities such as exercises repeatedly during the
day, and also monitors him to make sure that he is doing them correctly. She now feels that she
has taken on 75% of the responsibilities around the house, which was “a real hard jump” for her.
“I’ve taken on more the roll of being the more dominant one”, she shared while elaborating that
she had never been the dominant partner nor ever wanted to be, and that her husband “was
always the strong one”.
Interpretation and analysis. To the degree that the TBI alters the family functioning as
a whole, the uninjured family members must adjust in order to return the system to a state of
balance. Deficits must be identified and re-assigned to other family members. These deficits
could include financial responsibilities, caretaking, transportation, and various household chores.
Being assigned duties where the family member is not comfortable performing in can often lead
to overwhelming feelings of distress, anger, resentment, and helplessness. They may feel as
though they have been cornered and are being forced to perform these tasks in order to sustain
the family. This holds especially true if there are small children in the house. The feelings the
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family members have are further exacerbated by a lack of sleep, lack of support and poor selfcare. It is important that the family discern what tasks are critical to maintaining the overall
function and those that were extraneous. Taking on too many additional responsibilities could
heighten feelings that are already present due to the additional stress, function as a method of
avoidance, or in extreme cases serve as a means of emotional self-harm.
Throughout this process, roles change as each member attempts to compensate for what
the individual with the TBI cannot do. An examination of the relationality in this particular facet
of the experience indicated that each individual member begins to reframe his or her relationship
to the individual with the TBI. Spouses no longer see themselves as partners, but as caregivers.
Children report a reversal of conventional roles and now see the affected parent as a child. For
Michael, this change in role ignited disappointment because it wasn’t until his father was injured
that he was regarded as helpful and a good decision maker. A power differential is established
with the non-injured members having more power, regardless of age, over the individual with a
TBI. As it pertains to temporality, this may result in young children needing to mature
emotionally and cognitively much quicker than their peers.
Tiana’s experience was quite different in this particular area and it appears to be, at least
in large part, due to her father’s near complete recovery. She reported that he is practically back
to the person he was before the accident with minimal behavioral, emotional and physical
changes. Although she does help him with finances and other small tasks, he is largely
independent. She is not uninjured by the injury, however. Tiana shared that she will act to
protect her father when others seem to frustrate him, indicating a slight change in role. This
supports the ideology that the severity of the injury will dictate the level of disturbance to the
family.
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The Diverse Practices for Emotional Expression and Protection
As each family member experienced this traumatic event, it became important for him or her to
be able to expel emotion and rely on others for support. Beginning immediately at the point of
notification of the injury and proceeding from then on, each individual family member began to
accrue emotions and beliefs that more than likely were kept to themselves. Each family was
confronted on a daily basis with the dynamic experience of having a member with a TBI. Due to
the subsequent range of emotions that were aroused in direct relation to that experience, it
became important to ensure that family members were processing the emotions and allowing for
some type of external release.
For Participants Tiana, Jessica, Allison, and Ruth, religion and faith played a significant
role. While her father was still in a coma at the hospital, Tiana and those holding vigil had a
pastor come in and pray with them. “That’s all we did,” she shared, “was pray, pray, pray.”
When asked to clarify on what was being prayed for, Tiana said:
We were praying for God to heal him. To help him, help us. Um, we just kept praying
for the best. Just kept praying that He would heal his brain. That he would be back to
normal as possible and…anything like that. We wanted him to stay. We didn’t want to
lose another one.
Very firm in her faith and the role that God played in her father’s recovery, Tiana who was 22 at
the time of her father’s car accident stated unwaveringly, “…God helped us and he lived”.
Jessica stated that in addition to leaning on her husband for support that she went and spoke with
her priest “quite often”. In similar sentiment, Allison cited going to church, participating in
prayer meetings and spending “a lot of time at church with my church friends” as outlets. Ruth
stated:

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I said this to someone the other day that I don't know how people can go through this
without faith. We happen to be Roman Catholic Christians and so, I feel like my faith
and our parish community, uh...the priest...that we have surrounded ourselves with are a
great help for us.
Ruth also later added that her other friends, mother and aunt were influential supports in her life.
The only participant to do so, she also shared that she and her children routinely attend
individual counseling, including her three year-old son who has begun to exhibit some troubling
behavior.
Humor is something that Andrea and her husband reported using quite often. She shared
stories of how she may jokingly make fun of him and vice versa, smiling at the thoughts. If her
husband does not appreciate what she is saying, he has been known to respond, “Do I know
you?”, while she has utilized his short-term memory deficit to appear as though she has
predictive powers. Andrea also stated that she uses a “biofeedback” method to help her since she
has adverse reactions to psychotropic medications. She compares herself to others and seeks
individuals who have “got it a lot worse” than she does in order to maintain positivity. Jessica
shared that she and her family tend to routinely try “to roll with whatever comes up for a
minute”, taking each experience in stride and trying to not get overly emotional in their reaction.
Michael seeks competition as a healthy outlet for his emotions. He shared that he is
“emotional on my own time” but routinely tends to “put on that front for everybody else” until a
given task is completed and he can be alone. When he is alone, however, he likes the use of
physical challenge to process his emotions:

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Sometimes I'll go golf. Golf is probably one of my biggest outlets so I'll go hit the golf
course or I'll go shooting. I have several firearms and I like to shoot, trap and stuff like
that. So I'll go shooting, or, you know something...just...something that challenges me so
that I can get out the emotion through, you know? Competition is my best outlet.
These activities allow Michael to utilize a physical component where he can also be alone with
his emotions and away from the pressures he feels from his family.
Having realized “how precious it is to be with people during their good times and their
bad times”, Allison finds herself cherishing everyone around her. This was not always the case,
however. Prior, she recalls being in a depression and sitting either in her room, doing nothing or
on her phone “just trying to see that other people were happy”. Now she surrounds herself with
people and friends, doing “anything for anyone” in order for “everyone to be happy”. When
Tiana’s grandmother told her that she was not to get emotional or cry around her father, she
turned to an inner strength. “So I just….had to…be strong” she stated, seemingly distracted.
While describing multiple mechanisms that appear to be positively applied daily in an
attempt to cope with the insertion of a TBI to the family system, participants also reported that
these coping techniques do not always work. Ruth evaluated her family in saying, “I would say
we're about 25% living, 75% coping.” The dwindling hope for improvement of her father’s
condition seemed to trouble, then 16 year-old, Allison, who stated, “I’m not going to expect him
to get better”. When asked if her expectations were low in order to protect her from getting hurt,
she responded:
Um, yeah. I think it’s, yeah, maybe it’s just from more from my mindset so I can try to
just move on and try to, try to grow as a person so I can move on. You know, go to

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college. I got to get ready to go to college and move on with my life after college and
have a career, you know. It’s just things I’m trying to tell myself though.
She recalls coaxing herself into ignoring the situation entirely and “let it be”. She cited being
busy, lack of knowledge regarding the injury and rehabilitation process, and that she “didn’t
really like the way things were going, you know, my dad changing and all”, as motivators for
this particular approach.
Interpretation and analysis. For those who had a strong connection to a particular
religion, continuous prayer and ongoing support from their religious community was a resource
that was utilized beginning at the hospital. Prayer may allow the person to connect with their
higher power and request help, subsequently easing the feelings of helplessness that are
commonly felt. Outside support systems including religious communities are also very important
to the family as the person with the TBI is treated in the hospital, begins to recover and returns
home. These friends and family members may provide a listening ear, non-judgmental attitude,
or alleviate responsibilities by helping with tasks. As caregiving becomes more central to the
uninjured members’ role within the family, they may not have the opportunity, time, money or
drive, to seek out counseling or other types of emotional support. Friends and family may not be
clinically trained, but nevertheless provide the opportunity for the family members without a TBI
to express themselves. Engaging in sports and competitive events may provide the family
member with a medium where they can let out pent up aggression, frustration, or fear. The
exertion allows for both a physical and emotional exhaustion that seems to provide a sense of
cleansing.

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Other examples that were provided seemed to indicate a necessary distraction was
necessary in order to be happy or, at the very least, content. The seemingly over-investment into
the happiness of others may serve as an opportunity for the family member without a TBI to
regain feelings of power over a given situation as well the satisfaction from pleasing others. The
lowering of expectations for the person with the TBI, staying busy in other areas of their lives, or
purposefully ignoring the situation within their home in full indicates a protective need. Shifting
the focus away from the injury and the person with the injury appears to be directly related to the
aforementioned levels of fear experienced throughout the process of rehabilitation for the person
with the TBI. In order to not be let down or anguished further, the uninjured family member may
make these changes to how they participate in the experience. Doing so has the potential to
strain the relationships within the family, especially if it results in tasks not being completed or if
another family member resents the other for creating a physical and/or emotional distance. It
seems that, at times, the family member acts as if to “pause” one area of their life by focusing on
others.
The Depth to Which Grief is Experienced
Regardless of what activities they turn to for emotional release or protection, or the groups that
they look to for support, grief is experienced by most that have a family member with a TBI. The
devastating changes that occur to the individual who has sustained the injury carries throughout
the family system, incurring multitude of grievous emotional reactions within those family
members who do not have a TBI. Each of the participants discussed having experienced a
process of grieving related to the TBI causing event.
Prior to beginning the audio-recorded interview, Tiana stated that she “had done her
grieving”. When encouraged to elaborate, it was revealed that her grief was specific to her uncle

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passing away in the car accident in which her father was injured. She seemed hesitant, saying
“and then…” as though she wanted to continue to list areas where she grieved, but quickly stated
“that’s about it”.
Jessica spent a period within the interview depicting how others, such as her mother
Andrea, her husband, and children, were affected rather than defining her personal experience. It
took some time to get her to focus solely on her own experience. Revealing the depth of the
emotional anguish she experienced around the TBI in her family, she shared, “…if I try to look
back too much, I...I just might fall apart and I, I can't afford to fall apart.”
Generalized anger took place within Ruth’s grieving process:
Anger at him [her husband]. Anger at my kids. Anger at myself. Because you know, I, I
just...In the moment I feel angry. Why doesn't somebody help me? And then I say to
myself, ‘Why don't you just get over it and just do it?’ So I get angry at myself for being
upset with my family.
Ruth illustrated a sense of loneliness compounded by the demands made upon her by her
children, and now her husband. A sense of isolation and helplessness is tangible as she spoke.
She then discussed how the anger she felt was turned inwards when she realized how it might
affect her family. It seemed as though keeping her family happy and without conflict was one of
the previously discussed areas where she places pressure on herself.
The significant level of change in cognitive functioning and physical appearance
introduced a large amount of the grief for Participants Michael, Andrea, Jessica, Allison, and
Ruth. For each of these participants, an idea of their injured family member being “different”
was discussed. When asked to compare her father from before he incurred the TBI to after,
Jessica shared, “…they look similar but yeah, it's two different personalities. Completely

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different personalities.” She continued to share that at times she felt as though she was grieving
the loss of who her father was and that she would “spend a lot of time crying”.
A hardworking man, then 35 year-old Jessica rarely saw her father growing up. It was
not until she donated a kidney to him six years prior to his accident that she felt a “bond that
wasn’t there before” and was beginning to forge a relationship with her father. With regard to
her relationship with her father following his TBI, she shared:
We were developing the relationship and so...I kind of feel like we lost some of that
because we've gotten to the point where he calls me to settle arguments but he doesn't call
just...we don't call and chat anymore, you know? It's...so we've lost some of that.
When discussing the changes to her father’s personality, Jessica viewed the evolution of his new
personality comparable to a developing child. She cited examples of how he first acted like a
toddler who needed to be reprimanded and constantly supervised. Later he progressed to an
“elementary aged child”, making up stories, needing to have things explained, and showing
impulsive behavior. Today, Jessica believes her father has plateaued in his development at the
stage of an “upper level teenager”. “It feels like we've had to learn a whole new stage in life”,
she laments, “how to deal with your teenage parent… I'm not sure I feel equipped to deal with
teenagers, let alone my teenage parent.” She also finds it very jarring to think about the man her
father was before the accident. Awkwardly she chuckled and reiterated, “Like I said, we try to
roll with whatever he's doing right now. Hah. Because I can't...I just mentally and emotionally
cannot dwell on who he was.”
Michael, having confirmed that he was purposefully not allowing himself to get
emotional during the interview, shared matter of factly, “I think the script has completely

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flipped”. When asked if he sees his father when he looks at him, Michael responded, “…I'd have
to say no. I don't see...I don't see him personality-wise, I don't see him in the ability-wise, I don't
see him as a kind of looming figure. I don't see him as an oversight figure.” He indicated these
are all areas that were critical to his father’s character and presence before the accident.
With great emotion, Allison discussed the impact her now 50 year-old father’s car
accident had on him and, subsequently, the relationship she had with him. Her initial thoughts
following his TBI included “What happened to my dad?”, “Why is he not the person that he used
to be?”, as she began to notice that her father was no longer the “happy, cheerful person” she
once knew.
And so I wondered, you know, like what happened to…what…how could that happen so
badly that it changed him completely? ‘Cause people have experiences that change them
but I never would have thought that my dad could have changed that much.
She discussed fond memories of going fishing with her Dad throughout her childhood.
Sorrowfully, Allison shared that her father “kind of just dropped away” and that she “didn’t
know him anymore”.
She continued, “I just can’t believe he’s even here anymore. Like, his body’s here but he
isn’t. It’s sort of like he died but his body is still here.” In discussing how her relationship with
her father has been impacted, she stated:
…Dads are supposed to be the little girl’s hero. They look up to them. They’re your
knight in shining armor and I sort of felt like I lost that, you know, because I was doing
more things for him that he should be doing for me. And I just feel like that came so
suddenly. And I didn’t really get a chance to be with him the way a teenage girl should

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spend time with her Dad. So, I guess it just….It’s different. ‘Cause it was meeting
someone new.
Allison no longer sees her father as a man who can come to the rescue or support her in the way
that she feels a teenage girl needs. She sorrowfully shared that although she can physically see
her father, that the personality of the man that is with her today is not the father that she knew
growing up before his accident.
The sentiments regarding how the family member with the TBI had “completely
changed”, was “gone”, and “different”, identified in three of the four adult children interviews
were also shared by the two wives that were interviewed. Ruth discussed several of the reasons
she was initially attracted to her husband such as mutual interests, enjoying the same music, and
going on adventures. “There was a lot of fun things that we liked doing together”, she remarked.
When questioned as to whether any of the qualities that attracted her to him were present after
his TBI, she said “no” and referenced his diagnoses of anhedonia and disinhibition as possible
reasons why. Ruth admitted to feeling “flatlined” or numb, and discussed how her marriage has
been negatively affected:
You know, that good marriage…it's like you would lay down your life for your spouse
and lay down your life for your friends, and I…I…I don't think that he, he can. I don't
know that he wouldn't do it but I don't think he has the ability to, to be that knight in
shining armor.
Her overall view of her husband has been altered as well. She admitted that when she looks at
him she sees “a poor sick person” that she feels “terribly sorry for and helpless to, to give

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assistance to”. She goes on to state that at times she consciously tries “to look through that and
see the person that I married”.
Ruth later elaborated that her dedication to her marriage is a mixture of adherence to
wedding vows and being a kind individual who wants to help. She discussed how if his TBI had
been a different ailment such as cancer or liver disease, that she would not abandon him:
You know, he might behave differently with a different disease but I have to still look at
him, you know as this other person. The person that he...I have to endear him as the
person that I got married to. I think it's critical for my children.
Ruth also shared that although her husband believes that the family would have been better off if
he had died in the car accident, she does not. “In general, it might be easier”, she expressed, “but
I think that there are things that would definitely be way harder”.
According to Andrea, her spouse was significantly impacted by his TBI to the extent that
“…he’s not the guy I married. He definitely is not the same”. She actively searches the Internet
for information and had recently looked up what it is to grieve. Utilizing the information that she
had gathered, she appraised her experience and concluded that she had grieved for her husband
already “…because I went through a period where I said, ‘I want the old you back’. ‘ I want the
old you back’. ‘I want the old you back’”. She explained, however, that her grieving differed
from the grieving she would experience with a death:
It's...it's not the same as if you bury a person and you know this person's alive and right
next to you, so you can't really put in your mind, “Okay, the old one's buried”. You
know? What you have to do is just put it back in the memory and bring your new life
forward.

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She stated that rather than burying her husband, that she had to “forget about the way he used” to
be and put memories of him before the accident “in the back of my mind”.
Although past memories have a tendency of resurfacing, she works to tuck each one into
the back of her memory and brings her “new life” forward. This change in approach and regard
for her husband began following a support group meeting where it was said that, “…if you tell
your spouse that you want him to be like the old person he was, that puts a lot of guilt onto that
person”. Andrea said that she cannot “pursue that way anymore” and has come to accept who
her husband is today. As with her role changes, she accepted the change without necessarily
liking it.
Jessica was the only person involved in the current study who shared that she had seen
some positive change emerge from her father’s injury. Interestingly, one of Jessica’s two
daughters, who is diagnosed with high functioning autism and a seizure disorder, had
experienced an improved relationship with her grandfather:
So, um, whereas he didn't really “get” her before, they...they're on the same wavelength
now. They, they know about seizures and their, their personalities...they're a lot alike
now so it's very...it, it's very, um, uh...very interesting to watch them progress like that.
All other individuals engaged in the present study, however, felt negatively impacted by the TBI
onset.
Interpretation and analysis. Family members of those who have significant personality
changes attributed to their TBI experience heightened states of grief that rock the foundation of
their relationship with them. For the family members, the physical representation of who the

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person with the TBI was prior to onset is quite distressing, as the personality has now become
drastically different. They struggle with allowing the past personality to become a memory while
looking at the same person. Family members are caught in a temporality where they desire to
return to the past, but are faced on a daily basis with the present. Their new reality can challenge
their beliefs about life, death, and their understanding of what it means to be person. The
uninjured family members are caught in a purgatory where they are unable to grieve the loss of
their family member because they are still present physically and may have moments where a
glimpse of the personality from before TBI onset can be seen, but are significantly changed for a
majority of their days. Dependent upon the changes that occur to the personality following the
onset of a TBI, relationships between the individual with the TBI and their family could become
strained or lost completely. For some, it is likened to meeting someone new while other family
members may change their frame of reference to incorporate the feelings of pity or regarding the
family member with the TBI as a child. At times, the family members may have to exert
themselves cognitively and emotionally in order to force themselves to see the person that they
knew prior to TBI onset.
Family members also experience a deep loneliness throughout this ordeal as they desire
not only the personality to return, but are faced with the reality that their partner, spouse, or
parent, as they once knew them, are likely to be gone forever. Anger may arise as family
members experience feelings of persecution from a higher power, hopelessness, loneliness, or
abandonment. The abundance of emotion that is evoked throughout this experience is further
complicated by the need to ensure the functioning of the family system. This often disallows for
the family member to process or be present with all that they are thinking and feeling. As a
result, some family members may be terrified of falling apart. They have roles to play and tasks

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to complete. Should they allow themselves to experience the profoundness of all they have
encountered, they may run the risk of breaking down with the inability to put themselves back
together and function again. Instead, they may encourage an emotional numbing within them and
push forward to overcome another day.
As is common with many experiences of grief, those grieving show a propensity to recall
the good qualities of the person being grieved and possibly elevate them to a position of
reverence. Interestingly, both Ruth and her daughter, Allison, used the term “knight in shining
armor” to describe a role that their injured family member would never embody, eluding to the
idea that prior to his TBI he could have done so. Allison had much adoration for her father that
is common to children while Ruth admitted to a strained relationship before her husband’s TBI.
It is possible that Ruth, in elevating her husband to a position of honor, exacerbated her own
grief. She was now not only grieving who her husband was, but also the man he could have been
as well as her idealized version of him. Both women were disabused by their idealistic rendering
of this man in their life and confronted with the truth of mortality much sooner than they had
anticipated.
Tiana’s experience was different in this particular area as well. Again, it appears to be in
large part due to her father’s near complete recovery. She reported that her father is “fine” and
that the minimal changes to her father’s personality had little impact on who he is following his
TBI. Although Tiana had grieved the loss of her uncle, who had died in the same accident where
her father was injured, little to no grief was directed toward or pertaining to her father. This
supports the ideology that the severity of the injury will dictate the level of emotional distress
and grief experienced by family members.

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The Immutable Alterations to Established Plans for the Future
Each family member and the family as a whole experience the changes incurred by the person
with the TBI, at different levels. During the time following the initial onset of the TBI, none of
the participants knew what the end result or prognosis for their family member would be
although many feared the worst as they held vigil at their bedside. Questions were asked
regarding whether their family member would live or die, to what extent they would be impacted
physically, cognitively and emotionally, and to what degree the family system would need to
change in order to support this disability. As time passed and answers to such questions began to
emerge, each family member made the necessary changes in behaviors, hopes, goals, and plans
for the future to accommodate the person who returned home from the hospital.
Tiana shared memories of her wedding, discussing how “it was a little awkward because
like, before his accident he probably wouldn’t have had trouble walking down the aisle” which
consisted of grass for her outdoor wedding, and how they “were kind of balancing each other
down the aisle”. An experience she reported was “amazing” and “totally fine”. While
recovering, Tiana did not know whether he would be able to walk down the aisle. Today, she is
very happy and stated that “he’s still there for everything I need him for, so everything seems
fine”.
For those participants who voiced a distinct change in their loved one’s personality, the
idea of the future and/or completion of plans that had been made prior to the TBI onset seemed
bleak. Allison, in contrast to Tiana, had to significantly alter her expectations of what her
wedding day may be like:

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I started feeling sad about things because, um…You have to know that I love weddings.
I am obsessed with weddings…But I just, all I could think of is my wedding day and him
not being able to walk me down that aisle. You know? That’s every girl’s dream that
she…you know, that loves her dad. And my dad and I had a really good relationship
when I was really little.
Having already had her wedding, Jessica was looking forward to building on the relationship she
had fostered when she donated a kidney to her father several years before his accident at work.
Unable to do so she ruefully reflected, “I feel like we lost some of that. We don’t call and chat
anymore.” Her father’s grandchildren, some of which are her children, have had to alter their
expectations for the future, according to Jessica. She stated, “They’ve had a really hard time
coping with dealing with him” and that they often do not want to be around him.
Michael previously enjoyed attending professional football games, concerts, and various
sporting events with his father. He shared that his father is “very scared in crowds” and is “very
uncomfortable in crowds”, so they have not attended any of those types of events since his
accident. Although they can still complete projects following his TBI, Michael said that there is
a marked change in how he experiences time with his father:
If we do anything together I have to...it can't be like we're going to build a shelf and it's
relaxing and I can just sit back and enjoy building a shelf. It's I have to be a parent of
a....and it seems like a small child...that's using power tools that I have to watch and be
vigilant and be protective of everything while I'm trying to help build a shelf, in that
sense.

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Michael shared that although “before it was a situation where I kind of relaxed, kind of enjoyed
the making of what we were doing or enjoy making whatever it we were making” that to take on
such a task now is “kind of a burden at this point”. He has had to adjust his expectations for his
father in these areas, but doesn’t find that there is anything else that he would not get to do or
enjoy with his father due to his TBI.
Ruth explained that prior to her husband’s TBI, that she had thought about “aging and
getting older” and anticipated when she would “get married and grow old together with
someone”, often contemplating the “stuff you had hoped to do as your got older”. And then their
“lives changed”. Now, Ruth envisions a lonely and isolated future if no further progress is made
in her husband’s recovery. Dispiritedly she shared, “Now, I, I, I can't imagine...I feel he's
looking to me. Looking forward for me, it looks like it's going to be kind of lonely as my
children grow up and move on if things are status quo”.
Andrea shared that “this isn’t what we planned”, chuckling at the thought:
I figured that I would work until I ...he and I would work until retirement age and then
we'd travel. And, um, now retirement has come a lot sooner and we didn't have time to
prepare for it financially. Or, you know, do it as we planned. You know, we had plans
set out for years on what we were going to do. And now, even if like, we do travel, we're
going to have to stop for frequent rest breaks...
Differences in her husband’s stamina due to TBI-related challenges such as neural fatigue results
in a maximum driving time of two hours and leaves Andrea confident that they would no longer
be able to travel at “a normal pace”. Even if she were to drive more and make the frequent rest
stops, another concern is her husband’s ability to perform once they arrived at the destination(s):

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When we get there, like if we went to the Grand Canyon....if I wanted to go up and see
the sights, it would take him quite a while to get up there because of...he'd tire out and
have to sit.
Although Andrea still intends on travelling with her husband, she does not display any indication
of being excited or eager for the trip(s). “So you see how traveling is going to be?” she asked
rhetorically, exasperated with the idea.
Interpretation and analysis. As with experiences of grief, the family members of those
who had incurred significant personality changes as a result of their TBI felt that their future had
been considerably changed, dwindled, or taken away from them completely. The varying
degrees to which the future has been altered for the uninjured family member is directly
connected to the extent of the personality change in the person with the TBI. For Tiana, who
believes that there was little residual impact from her father’s TBI, there were hardly any change
to her foreseeable future. Although some accommodations were made to help her father walk
her down the aisle at her wedding, she still believes that he has a plethora of options available to
him as he progresses through life. Allison, however, realizes that her father may never walk her
down the aisle for her wedding. An experience, she feels, is critical for every young girl who
loves her father. As the TBI experiences progresses over time, the relationships that were once
had prior to the TBI between the injured and uninjured family members may be lost. This
includes immediate family members and grandchildren. Those who once had close relationships
with the family member before their TBI onset may feel a distancing or disconnect from the
person following their TBI. As was referenced in the prior section on grief, some family
members may not be able to or want to get to know someone “new”.

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Projections of the future become bleak as the family members without a TBI reconcile
that what had been planned with their family member with a TBI may never come to fruition or,
at the very least, as it had once been envisioned. Quality time that requires tools or situations that
could be potentially harmful can no longer be casually enjoyed, as the family member with a TBI
may need to supervise the person with the TBI much more closely. The shared enjoyment of
events prior to TBI onset may not be able to be pursued following the TBI due to limits in
stimulation or physical function. As the spouses discuss the future with their partner who has a
TBI, statements may be shared regarding how the future they see now is not what they had
planned as a couple, prior to the TBI onset. Due to the significant personality and physical
changes in their partner, in conjunction with the role changes that the uninjured spouse may
experience, there may be feelings of loneliness and not having a partner to proceed through life
with. Exasperation is a common feeling to this area of the TBI experience as well. With all of the
time and effort, mentally and physically, expelled in putting together trips, the family members
without a TBI may feel as though the significant adjustments to plans are too cumbersome to
warrant actually carrying through with preexisting plans.
For the family members of those persons with a TBI, their sense of the world is much
more defined now. Prior to the TBI onset, the uninjured family members held a sense of their
future and the world characterized as having a multitude of options from which to choose from
and explore. As the beginning of this TBI journey was characterized by a quickening experience
of time, for those with family members who have severe personality and physical changes from
their TBI, the concept of the future seems to feel stifling. It is as if they are stuck in time, unable
to progress any further. This is especially true if rehabilitation efforts have finished and little to
no progress is being seen in the person with the TBI.

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Information Not Included in Analysis
Six unique experiences of being a family member to someone with a TBI were shared in the
current study. Through the data analysis process, there were consistencies identified within a
sub-group of these six people, as well as with one person’s experience particularly, that was not
reflective of all individuals involved in the study. Therefore, these particular pieces of data were
not considered when identifying themes. The unique data to the sub-group and the individual,
respectively, is shared in this section of the manuscript.
Adult children. Of the six individuals who shared their experiences of being a family
member to someone with a TBI, four were adult children. Having a parent who experiences a
traumatic life event or illness can be hard for those children, whether adult or otherwise, who
have become accustomed to regarding their affected parent as a caregiver, defender or support,
since the moment they were born. Dependent upon where the child is developmentally, and their
ability to acknowledge the finite nature of life, they may have believed their parents to be
indestructible. Allison, who was only 16 years old at the time of her then 46 year-old father’s car
accident in 2012, shared that she “hadn’t anticipated” being relied on by her family to fulfill
some of the roles and responsibilities her father once had. When asked if she had thought she
may have had to do so later in her parents’ lives she confessed, “I wasn’t really prepared to do
that either.” This may be attributed to her young age, where she is developmentally, or her
willingness to identify her parents’ mortality. Of the four adult children, Allison was the only
who lived at home and did not have a family of her own.

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Michael, on the other hand, who was 26 years-old when his father sustained a TBI in an
automobile accident has a family of his own and anticipated caring for his parents when they got
older. The abrupt nature of the TBI caught him off-guard, however:

...I think that since it was such a sudden onset and it wasn't a gradual thing...that it was
very difficult to kind of jump into that role because yeah, to be honest I was expecting
some kind of care along this line, you know, in 15 years, 20 years. You know...but I
wasn't expecting it when we just got done visiting Santa Claus and having some hot
cocoa.

A tensioned vacillation began to emerge as Michael, Allison, and Jessica discussed how they
were in a position where they had to assume greater roles and responsibilities for their parents,
invest a greater amount of time to complete those roles and responsibilities, and subsequently,
potentially struggle to embody a raised position within the family system than that of child. It is
possible that when interacting with each other, that the parent who did not have the TBI and the
adult child had begun to blur the relational boundaries between friend, child, and counselor.
Birth order also appeared to be a unique factor to this adult children sub-group with
regard to how much the mother relied on them for support and help. Jessica shared that all that
she did is attributed to the role she has always played in the family, “That’s my role in the
family. I’m the helpful child.” This reliance was sometimes perceived to occur at an
overwhelming frequency, particularly for Michael and Jessica who had families of their own to
care for and no longer resided with their parents. Jessica’s parents had moved closer to her
following her father’s TBI onset and still her mother called her “several times a day” while she

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also “went over there [her parent’s house] two to three times a week.” Jessica illustrated the
tension she felt between meeting the needs of her parents and those of her own family stating,
And it’s stressful because it just feels like we can’t...They want us to meet their needs and
we’re trying but we’re, we’re trying to keep up with our own needs too...And sometimes
it feels like our [Jessica’s family] stuff falls in the cracks.
Michael, Allison and Jessica all shared bits of their experiences that indicate a sense of loyalty, if
not to the parent who sustained the TBI, to siblings and the uninjured parent. This loyalty
appeared to have repercussions on mental health and wellbeing, particularly for Jessica.
Tiana. As discussed throughout this chapter Tiana, who was 22 at the time of her then
60 year-old father’s car accident in 2012, shared an experience that was markedly different in a
variety of areas from those of the other family members involved in the present study. A selfconfessed “daddy’s girl”, Tiana shared that she had always been “really close” with her father
and had “never really thought anything would happen to him.” Four words that Tiana used to
describe her father before his car accident were “Hardworking, generous, kind, [and] awesome.”
When prompted for four words describing her father following the onset of his TBI Tiana replied
with a smile, “He’s still the same...Same four words.” To Tiana, her father looked “exactly the
same” with minute differences that only someone close to him would notice. Although she
acknowledged the awkwardness when her father asked her to wipe him after using the bathroom,
the way in which she regarded her father never changed. “Even if my dad was a vegetable,” she
shared, “he would still be my father.”
It is possible that Tiana’s unique experience can be credited to her ethnic and racial
heritage. She was the only family member in the current study to share her cultural background.

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Being of partial Korean descent, communalism may have influenced the way she handled her
father’s TBI. It can also be posited that the differences in her experience are due to her
perception of her father’s near-complete recovery from the injury. Her ability to view her father
in this way may have allowed Tiana to reframe the experience and the way in which she shared it
in her interview. There are endless possibilities and conjectures that can be made, as to why
Tiana’s experience stands out from the five others involved in this study.
Conclusion
The purpose of the present study was to explore the experiences of family members of adults
who have acquired a TBI within the last three years. Although each experience was unique with
regard to how it was felt and encountered, six areas were experienced across all six accounts.
Those areas were: (1) an abrupt onset requiring necessary and rapid response, (2) the multiform
manifestations of fear, (3) the significant role changes within the family system, (4) the diverse
practices for emotional expression and protection, (5) the depth to which grief is experienced,
and (6) the immutable alterations to established plans for the future. Chapter 5 will discuss the
implications of these findings as it pertains to researchers, family members of a person with a
TBI, practitioners, and evaluate whether the application of ambiguous loss theory is appropriate
for the familial experience of TBI.

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CHAPTER 5
DISCUSSION
The purpose of the present study is to explore the experiences of family members of adults who
have acquired a Traumatic Brain Injury (TBI). The research question that was sought to be
examined was: How do immediate family members describe, and what is the meaning of, the
experience of having an adult family member with an acquired TBI within the first three years.
Research posits that the family members will be impacted equally to that of the member with the
brain injury, if not more so (Brooks, 1991). The literature further states that due to the likelihood
that family members will have a direct impact on the person with the TBI and the rehabilitation
process, it is important to gain a deeper understanding of their experiences, with particular
attention paid to how they cope emotionally and practically (Dausch & Saliman, 2009; Oddy &
Herbert, 2003).
Factors which may impact the experience of the family members of a person with a TBI
include social perceptiveness; impaired control and self-regulation of the person with a TBI; the
family’s perception of the impact; premorbid family stability and coping behaviors; the trajectory
of the illness and rehabilitation process; behavioral, personality, and emotional changes; as well
as issues pertaining to memory, concentration, problem-solving difficulties, and executive
functioning, are all argued to have an inverse relation to caregiver life satisfaction (Brooks, 1991;
Brooks et al., 1987; Duff, 2002; Flanagan, 1998; Knight et al., 1998; Kosciulek, 1995; Kreutzer,
1992; Lezak, 1978; Livingston et al., 1985; McKinlay et al., 1981; Oddy, 1995; Oddy et al.,
1978; Thomsen, 1974; Thomsen, 1984; Ergh et al., 2003; Kneafsey & Gawthorpe, 2004;
Ponsford et al., 2003; Semlyen et al., 1998). The repercussions of a TBI on the family system
have been reported to remain impactful up to 15 years post-acquisition (Frosch et al., 1997).

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Comparison to Previous Research Findings
The present study has confirmed much of what the TBI literature has reported within the
past 30 years while also bringing lesser acknowledged or focused on areas to the forefront of the
experience that family members have when there is a person with a TBI within the family
system. The sections that follow will discuss each of the identified themes of the present study
in relation to previous brain injury research. The appropriateness of the application of ambiguous
loss theory to family members of persons with a TBI will be evaluated. In addition, limitations,
implications, and suggestions for further research will be reported.
An abrupt onset requiring necessary and rapid response. As presented in the current
study, the initial period of TBI onset is experienced as a hastening of the anticipated future to the
present. Rapid onset leads to a whirlwind of emotions, thoughts, and fears for each individual.
As they tried to understand, process, and be present in the moment, the family members had to
simultaneously provide information and decisions that could greatly impact their loved one.
Previous knowledge or experience with TBI added to the pressure felt to respond and decide
both accurately and expeditiously. Caregiver emotional distress began upon injury onset and
was exacerbated when the individual with the TBI is discharged from acute care. It has been
postulated that due to the focus of practitioners and care team members being primarily on the
person with the injury and not toward helping the family to process and understand, that family
members tend to perceive a lower overall quality of their life and greater psychiatric morbidity
both during and following hospital treatment (Sinnakaruppan & Williams, 2001).
The family members sought to make the future known during this period, but instead
were stuck in an uncomfortable period of waiting. Literature supports this aspect of the

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experience as being common, positing that the family has needs while their family member is
engaged in in-patient care. These needs include the need to know information concerning
treatment, drugs administered, and pain management both while the member with the TBI is in
the hospital and once they are discharged; the need for consistent information; the need for
involvement in care; help finding and evaluating providers; hospital discharge support; employer
support for the family caregiver; life planning assistance; networking needs; and the need to
make sense of the experience (Bond et al., 2003; McLennan et al., 1996; Lefebvre & Levert,
2012; Leith et al., 2004; Murray et al., 2006; Rotondi et al., 2007; Sinnakaruppan & Williams,
2001).
Directly following the TBI onset and the execution of medical care, every action,
behavior and sound was analyzed by the individuals in this study as being either potentially
promising or of concern. Optimism was present, but not without caution. During periods of
coma, whether medically induced or otherwise, the family members sat without much indication
of the overall outcome. All existing family roles, known frameworks by which they operate, and
general rules of engagement were dependent on the outcome of this experience. The men and
women who participated in the present study all communicated a deep desire for answers
regarding the prognosis of the individual with the TBI, and a need to understand how the
established relationship would change, consistent with the literature. The experience of
uncertainty regarding the future, anticipated necessary caregiving, precarious condition
prognosis, and the self-perceived coping ability of the caregiver is reported to result in an
exacerbation of distress (Lefebvre & Levert, 2006; O’Callaghan, et al., 2011; Turner et al.,
2007).

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Dependent upon the severity of the injury, there may be several life sustaining
technologies utilized, as well as physicians and other care team members who are instructing the
family that their loved one may not survive the injury (Oddy, 1995). For the people in the
present study, seeing what was once an autonomous spouse, partner, or provider dependent upon
a variety of machines, including feeding tubes, ventilators, and medication dispensers, proved to
be very distressing. They were presented with a life or death situation that had not been
anticipated to occur for a number of years, if at all. Should life be the outcome, it was
automatically believed that the individual with the TBI would return to functioning as he or she
was prior to the TBI. Most often not the case, this belief is a leading factor associated with
extended grieving processes (Oddy, 1995). The interactions that occur between and within
family members during this time is not unique to TBI, but is also shared with any person who
has experienced a sudden, life-threatening event of a family member.
The multiform manifestations of fear. Within the present study, fear was experienced
in a multidimensional way as it pertained to having a person with a TBI in the family. The
unanticipated nature of the injury and resulting disability brought the concept of mortality to the
forefront of the person’s mind. Concerning family resiliency, the literature supports this
experience in positing that “family members may be tormented, hoping for the best while fearing
the worst,” and developing problematic clinical symptomology (Walsh, 2006, p. 201). Other
phenomenological research has reported that, “close relatives’ struggles with feeling of fear and
despair – mixed with the willingness to fight - are seen from the beginning when they ‘got into
the unknown’” (Jumisko, Lexell, & Soderberg, 2007, p. 362).
Fear and sadness were both present for the family members in this study as they tried to
predict the future. Concerns, pertaining to the permanency of the situation as it was observed in

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the initial days and weeks since TBI acquisition arose. Both while in the hospital and after being
discharged, the emotional and physical toll of having a family member sustain a TBI was great,
and produced frightening thoughts of situational permanency.
At least two of the family members who participated in the current study were required to
make decisions which had the potential to greatly impact the prognosis and ultimate outcome of
their loved one’s disability beginning immediately following TBI onset, as is also documented
within the TBI literature,. During acute treatment, the present study found that family members
felt great pressure to act quickly and accurately while also experiencing an intense emotional
reaction to the situation, causing periods of time to seem as if they were passing rapidly. While
at the hospital, the family had few resources to inform important decisions, which left them to
speculate as to the correct direction of care. In a desire to honor the wants and needs of the
affected family member as the family knew them prior to TBI acquisition, these family members
feared the potential of a wrong decision that may have dire consequences. This fear continued
following discharge if the person with the TBI was unable to make sound decisions for
themselves and a family caregiver was awarded permanent guardianship. With regard to the
ambiguity of the situation, the literature finds similar emotional reactions where “the family may
feel tremendous guilt and may be unable to make decisions, fearing that the wrong choice will be
made" (Betz and Thorngren, 2006, p. 361).
Fear, as well as the specific areas in which a person becomes fearful while experiencing a
family member with a TBI, is an area that is not well documented within the TBI literature. It is
possible that this is because people assume that fear is an innate part of this experience. The
present study would then confirm this assumption. However, fear, as exhibited in the present
study, is not just a one-dimensional emotion, but rather, pertains to several different areas of the

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experience for each person. Specific areas of fear that the present study contributes to the
literature includes: the permanency of the new personality, the possibility that the individual with
the TBI may engage in risky behavior, not knowing who would take care of the uninjured spouse
in the event of their decreased health status, and of the family member dying and leaving the
injured spouse without their care.
The significant role changes within the family system. To the degree that the TBI
alters family functioning as a whole, the uninjured family members in this study had to adjust in
order to return the family system to a state of homeostasis. Areas within the family where the
person with the TBI primarily took responsibility included financial responsibilities, caretaking,
transportation, and various household chores. As illustrated within the present study and the
literature, the loss of this person’s ability to fulfill his or her roles in the family may result in
other family members having to compensate for this absence, by taking it on themselves (Von
Suhr, 2003). Being assigned and having to balance multiple additional duties, some of which the
family member may not be comfortable performing in, was shared in the experiences of those
involved in the current study. This resulted in overwhelming feelings of distress, anger,
resentment, and helplessness. There is a strong position within the research that supports this
finding stating that caregivers may feel “overwhelmed due to the lack of assistance by other
significant others, feeling restricted socially and dealing with the reality that their pre-morbid
loved one may be permanently different” (Elbaum, 2007, p. 275; Dell Orto & Power, 2000;
Jumisko et al., 2007; Von Suhr, 2003).
Both Ruth and Andrea shared that they felt as though they had been cornered and were
being forced to perform these tasks in order to sustain their family. This held true especially if
there were small children in the house, as was the case for Ruth. Several research studies report

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what has been shared by those engaged in the present study; that the daily lives of the uninjured
family members have been permanently changed (Ponsford, et al., 2003; Rappaport, et al., 1989;
Thomsen, 1984). The current study illustrated how each individual member began to reframe his
or her relationship to the individual with the TBI over time. Spouses shared that they no longer
saw themselves as partners, but as caregivers or a parent, as is documented within the literature
(Gosling & Oddy, 1999; Muir, et al., 1990). Children report now seeing the parent with a TBI as
a child, possibly resulting in young children needing to mature emotionally and cognitively much
quicker than their peers (Muir et al., 1990).
Tiana’s experience was quite different in this particular area and it appears to be, at least
in large part, due to her father’s near complete recovery. Having reported that he is practically
back to the person he was before the accident, with minimal behavioral, emotional and physical
changes, he was largely independent. This supports the position reported in the literature that
states that the severity and level of impact on functioning in the individual with the TBI
determines whether the person with the disability can continue to fulfill the roles s/he operated
within, such as husband, wife, child, and employee (Frosh et al., 1997). Tiana did share that she
acted in a manner that was protective of her father at times. Having had to be a support and
caregiver for a length of time, her experience appears to support the presupposition that “the
increased responsibility for the ill person changed [sic] when the person got better, but it never
ended” (Jumisko et al., 2007, p. 363).
The diverse practices for emotional expression and protection. Much of the research
pertaining to family members of people with a TBI inquires into the degree to which coping
methods are used or seek to confirm whether a hypothesized intervention could address
established areas of coping, such as social support (Ergh et al., 2003). Of the studies that

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research the varying forms of coping mechanisms for the family members of people with a TBI,
many are quantitative in methodology resulting in participants having to select from pre-existent
categories (Wells et al., 2005).
The limited number of qualitative studies that provided open-ended questions regarding
coping strategies reported that family members may engage in religious rituals or seek support
within the religious community (Duff, 2002), and seek support from family and friends (Duff,
2002; Smith & Smith, 2000). Knight et al. (1998) report that while conducting their research, the
spouse of a person with a TBI had emphasized that the idea of coping did not exist, but rather
referred to doing what she had to do without a choice. Other qualitative literature did not include
individual responses, but provided the categories that were developed from analyzing them.
Man (2002) included categories of acceptance, rationalization, planning activities, actively
looking for solution, seeking support and encouragement, directing attention to other activities,
and use of social resources. Kosciulek’s (1994; 1997b) supposition that coping strategies vary
depending on the region in which they are learned and executed encourages the use of more
qualitative, open response methodology in this area in order to attain specific practices.
In agreement with existing literature, those family members involved in the present study
also shared that they made use of their religion and religious community, utilized family and
friends as support systems, and stayed busy in other areas of their lives as a means to redirect
their focus. The present study added to the body of TBI literature by identifying ways of
emotional expression or protection that had not been previously reported, such as engaging in
sports and competitive events, over-investment into the happiness of others, the lowering of
expectations for the person with the TBI, or intently ignoring the situation within their home as a
whole. Engaging in sports and competitive events may have provided the family member with a

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medium where they can let out pent up aggression, frustration, or fear. The exertion allowed for
both a physical and emotional exhaustion that seemed to provide a sense of cleansing. Overinvestment into the happiness of others may have served as an opportunity for the family
member without a TBI to regain feelings of power over a given situation as well the satisfaction
from pleasing others. Finally, shifting the focus away from the impact of the injury on the
family and the person with the injury appears to be directly related to the aforementioned levels
of fear experienced throughout the process of rehabilitation for the person with the TBI. The
latter two experiences appear to have provided an opportunity for the family member to “pause”
one area of their life by focusing on others.
The depth to which grief is experienced. Brooks (1991) stated, “For the family
members, severe brain injury is forever, although few, if any, family members realise [sic] this in
the early stages” (p. 181). To varying degrees, each of the people involved in the current study
shared this same experience. Even Tiana, who felt her father has recovered 90% of the way from
his injury, cited some long lasting changes to her life including how she now treats her father.
For the other people involved, the cycle of hope and disappointment seemed to consistently
prolong the experience of grief.
It has been posited within the literature that post-injury deficits and changes, the kin
relationship between the caregiver and the person with the TBI, the ability of the family system
to cope with crisis-imposed stress, and established family schemas all influence the extent to
which the family perceives that they have been affected and are able to adapt (Flanagan, 1998;
Kosciulek, 1997b). Furthermore, the trajectory of the illness and rehabilitation of the individual
with the TBI is reported to influence the level of hope experienced and overall functioning
enacted by the family system and its individual members (Brooks, 1991; Duff, 2002; Knight, et

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al., 1998). Kosciulek (1997b) postulated that if a family does not value ideologies such as
connectedness and the value of a human being with a disability, they are less likely to adapt
positively to the presenting situation.
The present study does not support this, but rather illustrates how, through the great love
and value that family members have for the person with a TBI, grief is heightened, the cycle of
hope and disappointment is extended, the feelings of ambiguity are deepened, and the likelihood
that the family member or family system as a whole will not adapt or cope in a positive or
effective way is enhanced. This is supported through the research of Walsh (2006) who posited
that the cyclical nature of hope and disappointment might hinder the family members’ ability to
adapt and cope with the sudden onset of the TBI in a loved one. Consequently, “family members
may be tormented, hoping for the best while fearing the worst”, and developing problematic
clinical symptomology (Walsh, 2006, p. 201; Boss, 1999).
TBI sequelae and the effect on the family. To the extent that TBI sequelae impact the
psychosocial adjustment of uninjured family members, it is important to acknowledge the lasting
negative effects. Variables identified within the literature include: severity of injury;
psychosocial maladjustment of the person with a TBI; restrictiveness in the day to day physical
functioning of the person with a TBI; the person with the TBI being a father of young children;
less marital cohesion and increased marital conflict (Perlesz et al., 1999); impaired social
perceptiveness; emotional alterations (Lezak, 1978); memory and concentration problems;
problem-solving difficulties; executive functioning deficits (Ergh et al., 2003; Kneafsey &
Gawthorpe, 2004; Ponsford et al., 2003; Semlyen et al., 1998); a loss of inhibition; inflexible
concrete thinking; irritability (Oddy, 1995); childishness; and aggression being the most

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disturbing (Brooks et al., 1987; Kosciulek, 1995; Kreutzer, 1992; Livingston et al., 1985;
McKinlay et al., 1981; Oddy et al., 1978; Thomsen, 1974; Thomsen, 1984).
For the individuals involved in the present study, those who perceived significant
personality changes in their family member that were attributed to the TBI experienced
heightened states of grief that altered the foundation of their relationship with the injured family
member. Jessica had shared how although her father may look similar to the person she knew
prior to his slip and fall accident, that the personality differences were remarkably different. She
went on to discuss how she felt she was parenting her parent, who exhibited tendencies that she
compared to those of her teenage son. Michael also no longer saw his father as he was before his
TBI onset, in multiple areas of his personality. For the people in the present study, the long
lasting effects of the TBI on their family member’s personality greatly disrupted the relationship
between them and prolonged their experience of grief.
Psychosocial health and wellbeing. The present study illustrated how anger may arise as
family members experience feelings of persecution from a higher power, hopelessness,
loneliness, or abandonment, as a result of the onset of TBI within their family member. The
abundance of emotion that was evoked throughout this experience is further complicated by the
need to ensure the functioning of the family system, often disallowing for individual family
members without a TBI to process or be present with all that they are thinking and feeling. Due
to the need to complete and fulfill their tasks and roles, in addition to those they assumed
following the family member’s TBI, family members were frightful of allowing themselves to
experience the emotions attributed to all they have experienced and did not want to risk the
possibility of breaking down. This could have potentially resulted in being unable to regain
composure and resume everyday functioning. Instead, they may have encouraged an emotional

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numbing, similar to depression, within themselves in order to push forward to overcome another
day.
The experiences shared in this study are in congruence with the existing TBI literature. A
number of studies have reported that being the caregiver for a person with a TBI may result in a
variety of difficulties including, but not limited to: stress; affective disturbance; depression;
anxiety; psychosomatic disorders; substance abuse; financial difficulties; and poor social
performance (Albert et al. 2002; Flanagan, 1998; Lefebvre & Levert, 2012; Leith et al., 2004;
Murray et al., 2006). The number of unmet needs and of complications brought on by the TBI
perceived, are posited to be related to psychiatric morbidity in the caregiver (Kreutzer, et al.,
1994a; Moules & Chandler, 1999; Nabors et al., 2002).
Family members are often the ones to provide care for a family member with a TBI
(Degeneffe, 2001). It is postulated that this is due to a sense of obligation and necessity that the
uninjured family member feels rather than voluntary choice. Kreutzer et al. (1994a) further
report that this sense of duty that exists may serve as a predictor for increased depressive
symptomology. Ruth’s experience of feeling as though she was held captive to her husband’s
needs and wants, was in agreement with these inferences. Andrea, also a primary caregiver,
shared that she has had “situational depression” all of her life and goes through depressive states.
She did not elaborate as to whether her depression had been exacerbated by her husband’s TBI
but did share that she had to work through her depression on her own because, due to adverse
reactions, she cannot take any antidepressant medications.
Of relative caregivers to individuals with a TBI, approximately 31%-45% experience
clinically significant anxiety, while 21%-32% report clinically significant depression (Flanagan,

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1998; Kreutzer et al., 1994b; Perlesz et al., 2000; Ponsford et al., 2003). The present study
extends on these postulations, and suggests that close family members who are not the primary
caregiver may also experience similar affects, including those close family members who may
not live in the same household as the person with the TBI, such as adult children,. Boss (1999)
and Duff (2002) hypothesize those family members who experience an extensive loss of control
over a crisis situation that includes ambiguity, may feel a barrier to the coping and grieving
process, subsequently resulting in greater rates of depression, anxiety, and family conflict
symptomology.
The loss of the person they once knew. The people involved with the current study
shared that they, at some point throughout this experience, felt a deep loneliness as they longed
not only for the personality of their family member with the TBI to return, but were faced with
the reality that their partner, spouse, or parent as they once knew them, are likely to be gone
forever. For many families in the initial stages of TBI onset, there are two possible outcomes:
death or living. For many individuals, these extremes are the only sensible options available,
regardless of whether the experience is in reaction to the acquisition of a TBI by a family
member or other life-threatening situation. Living is instinctually interpreted as a full recovery
from the injury, resulting in a full return to the personality and functioning of that before TBI
acquisition. This however, is not the most common outcome for persons with a TBI (Oddy,
1995). Rather, most individuals find that the person with the injury returns to a state physically,
cognitively, and emotionally within the continuum between life and death.
For five of the six people involved in the current study, as described above, the family
member with the TBI’s physical body remained present while the personality had been
drastically changed. Romano (1972) reported that this drastic change, coined personality death,

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is far greater of a loss than physical death. With personality death, the uncertainty of whether the
person will recover and reassume their prior personality and role often leaves family members in
a state of constant or extended grief (Duff, 2002; Lezak, 1978; Oddy, 1995; Oddy & Herbert,
2008). This grief is further compounded by forced isolation brought about by the perception that
society finds the grief of the family member unwarranted (Del Orto & Power, 2000; Harvey,
2000; Harvey, 2002; Kozloff, 1987; Oddy & Herbert, 2008; Sacks, 1970; Walsh, 2006).
Oddy (1995) posited that how the family caregiver perceives the impact of the TBI on
their family member informs the degree to which the family caregiver perceives their loved one
to have changed. Feelings of anxiety and confusion within the family arise from the ambiguous
nature of a TBI diagnosis, making the uninjured family member cautious about sharing concerns
about death and loss to others outside of the experience. As with the aforementioned relationship
of family caregivers to clinical levels of depression and anxiety, the present study provides
support to extend this postulation to non-caregiving family members through the shared
experiences of Michael, Allison and Jessica. Furthermore, the experience of Tiana, a noncaregiving family member who shared that there was minimal lasting impact of the TBI on her
father, confirms the inverse when she stated, “he’s still the same.”
Muir et al. (1990) postulated that, “In some cases, the survivor’s family members report
that fundamental aspects of the survivor’s personality have changes [sic]…In other words, that
the person they knew and loved is ‘dead’” (p. 436). Allison’s experience with her father, who
incurred a TBI when she was just 16 years-old, supports this statement. Allison had shared that
she had seen the enjoyable and entertaining part of her father disappear and that without those
qualities, her father no longer felt like the same person to her. The ambiguity of her situation,
supported within the literature, was captured when she conveyed that speaking with her father

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following his accident was as if she were meeting someone for the very first time that had
miscellaneous memories of her and their prior life together. The cycle of hope and
disappointment was addressed by Michael when he commented that he viewed his father’s TBI
as a loss “in some sense” but that he would not classify his reaction as grief due to his
anticipation of milestones that he believed would be achieved in the future.
Ruth seemed to have an inflated perception of who her husband was prior to his TBI
onset. Despite stating that her relationship had been moderately strained prior to onset, Ruth
conveyed concerns regarding her husband’s ability to return to a state where he would act as her
“knight in shining armor.” This may have extended and deepened the grief that she has
experienced, as the misinterpretation of external events has been reported to mediate emotional
distress (Koopermans et al., 1994; as cited in Stebbins & Pakenham, 2001). Ruth’s conviction
toward recalling her husband’s good qualities and possibly elevating him to a position of honor,
according to the definition found within the literature, supports the postulation of the existence of
unrealistic misinterpretation within the experience of having a family member with a TBI. This
may prove troublesome as the literature further posits that “unrealistic misinterpretations are
related to caregiver psychological distress after controlling for the effects of characteristics of the
caregiving situation and the individual with TBI” (Stebbins & Pakenham, 2001, p. 187). How
Ruth perceives her husband as he was now and prior to his accident may be one step in a
transformative process that she engaged in, possibly mitigating the emotional pain or thoughts
that may have been deemed socially unacceptable. The perceived meaningfulness of the brain
injury affects family adjustment outcomes, at times more significantly, than clinical assessment
scores (Kosciulek, 1997; Muir & Haffey, 1984; Stebbins & Pakenham, 2001). On this premise,
it is critical for the family members to be able to honestly and accurately evaluate the condition

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of the family member with a TBI. Only then will the family system, as a whole, be able to begin
to cope and adapt to the disability successfully (Beck, 1995; Lazarus & Folkman, 1984; Stebbins
& Pakenham, 2001).
The literature has posited that the reactions of the family, as well as the pursuance of
coping and adaptation, typifies that seen in family members who have experienced a death or
significant trauma of a loved one (Man, 2002). Kean (2010) reported that when speaking to
family members of individuals who have a severe TBI, most utilize the past tense when
discussing their loved ones. In order to attain a strong level of coping and adaptation, Smith and
Smith (2000) suggest that the family members of individuals with a TBI “…needed to mourn the
loss of the person they knew” (p.30).
The immutable alterations to established plans for the future. As with opportunities
for emotional expression and protection, the TBI literature provides little insight in the area of
changes to plans for the future. Superficially, research pertaining to the future identifies that the
family members have difficulty with the significant, life-long changes that have occurred and
will continue to as a result of the TBI. The literature postulates that by 12 months post-injury,
families begin to establish a clear idea of what the future will look like (Ponsford et al., 2003;
Rappaport et al., 1989; Thomsen, 1984). The experience of having a family member with a TBI
has been posited to be replete with loss, and a concentration of those feelings manifest as the
family member tries to envision the future of, and with, the person with the TBI (Godwin, 2014;
Kean, 2010). Kean (2010) extrapolated several broad categories in which loss is experienced in
his research, one of which was future dreams. The literature does not, however, discuss how
specific, established plans have been changed and the resulting emotions that arise from this
aspect of the experience of having a family member with a TBI. The present study added to the

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existing body of TBI literature by identifying a number of specific, established future plans and
gaining insight as to the emotional effect the necessary changes had on the uninjured family
member.
The family members of those who had incurred significant personality changes as a result
of their TBI in the present study felt that their future had been considerably changed, dwindled,
or taken away from them completely. For Tiana, who believed that there was little residual
impact from her father’s TBI, there were very minute changes to her foreseeable future. Allison,
however, realized that she might never have the anticipated experience of her father walking her
down the aisle for her wedding; a dream that she had maintained since she was a young girl.
Relationships that were established prior to the TBI between the injured and uninjured
family members may feel more distanced or disconnected from the person following their TBI,
or could be lost altogether. Some family members may not be able, or want, to get to know
someone they perceive as “new.” Jessica experienced a sudden loss in some areas of the
relationship she had built with her father in the few years preceding the onset of his TBI. Their
relationship following her father’s accident no longer included casual conversations. She also
discussed how the TBI had impacted her children in that they are unsure of their relationship
with their maternal grandfather and often avoid being around him.
Projections of the future become bleak as the family members without a TBI reconcile
that what had been planned with their family member with a TBI may never come to fruition or,
at the very least, as it had once been envisioned. Michael shared that quality time with his father,
which might require power tools or situations that could be potentially harmful, could not be
casually enjoyed as they were prior to his father’s accident. Rather, he felt as though he needed

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to watch over his father, just as he would with his young child, and ensure that he remained safe
from harm. Michael later shared that there are other activities that he hopes he can resume with
his father such as sporting events.
The shared enjoyment of events prior to TBI onset may not be able to be pursued
following the TBI due to acquired limits in stimulation or physical function. Andrea had
articulated how the future she envisions no longer aligns with what is possible following her
husband’s TBI including traveling and the possibility of her husband caring for her during times
of illness or poor physical health. Due to the significant personality and physical changes in their
partner, in conjunction with the role changes that the uninjured spouse may experience, there
may be feelings of loneliness due to the perception that the uninjured spouse no longer has a
partner to proceed through life with, as was the case for Ruth.
For the family members of those persons with a TBI, their sense of the world is much
more defined. Prior to the TBI onset, the uninjured family members held a sense of their future
and the world that was characterized as having a multitude of options from which to choose from
and explore. Jumisko et al. (2007) postulates that the family members of people with a TBI are
“…forced to relinquish the life they had planned and instead find a new way of living with the
changed person” (p. 363). This may result in a concept of the future that seems to feel stifling,
ensnaring them into a given point in time where they feel they are unable to progress any further.
Relationship of Findings to Ambiguous Loss Theory
Boss (1999) defined ambiguous loss as “an incomplete and uncertain loss” (p. 3). Although this
ambiguity may be exhibited as a result of two distinct situations, that which applies to the
experience of having a family member with a TBI involves having a family member be

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physically present but psychologically absent. Ambiguous loss is composed of several factors
that serve to hinder the grief experience of the family as a direct result of the unattainable
resolution to the loss, subsequently suspending family dynamics until comprehensibility is
provided (Betz & Thorngren, 2006; Boss, 1999; Boss, 2002; Boss, 2004; Von Suhr, 2003).
It is posited that ambiguous loss is the “most stressful kind of loss because it defies
resolutions and creates long-term confusion about who is in or out of a particular couple or
family” (Boss, 2006, p. xvii) and can result in “behavioral and psychological helplessness”
within each of the members included in the family system (Boss, 2004, p. 211). Betz and
Thorngren (2006) acknowledged that this phenomenon might result in family members going
through unending cycles of hope and disappointment.
Physical symptoms of ambiguous loss include fatigue, headaches and sleep disruption,
while cognitive issues manifest as an ongoing preoccupation with the loss and its surrounding
circumstance, forgetfulness, and worry. Behavioral impacts include persistently remaining quiet,
hypervigilance, dependence, avoidance, and overall withdrawal from daily activities. Lastly,
emotional complications from ambiguous loss include loneliness, anger, irritability, anxiety,
depression, or apathy (Betz & Thorngren, 2006; Blieszner, et al., 2007; Boss, 1999; Boss, 2002;
Weiner, 1999).
The current study illustrated how each of the emotional complications was embodied for
five of the six people who shared their experience. Michael, Andrea, Jessica, Allison and Ruth
experienced negative emotions ranging from “scared”, “reminiscent”, “overwhelmed”,
“depressed”, ”anger”, “stressed” and “isolated.” Furthermore, these five individuals also shared
how they independently experienced moments of hope as the person with the TBI made progress
in rehabilitation or if they acted in a manner characteristic of their personality prior to onset. In

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accordance with the vacillating nature between longing and disappointment of ambiguous loss,
these family members did not maintain much hope for their injured family member’s recovery.
With each positive experience, however, they could not help but hope for just an instant that they
may have been wrong. This natural fluctuation is documented within the ambiguous loss
literature. Boss et al. (2003) posit “…it is human to hang on to any sliver of hope for some
miraculous return” (p. 456).
Tiana shared a different long-term experience regarding having a family member with a
TBI. For her, there was boundary ambiguity at the beginning of her journey. Boundary
ambiguity, being independent of ambiguous loss, is broadly defined as “a state in which family
members are uncertain in their perception about who is in or out of the family and who is
performing what roles and tasks within the family system” (Boss & Greenberg, 1984, p. 536;
Carroll, Olson, & Buckmiller, 2007). For those who have a TBI, it has been reported that
boundary ambiguity develops as a result of disruption to interpersonal relationships, among other
areas (Landau & Hissett, 2008).
Tiana’s ambiguity was also coupled with fear, mild role changes, and a period of time
where she was unable to attain concrete information pertaining to her father’s prognosis. As
Tiana’s father improved both physically and cognitively, returning to a state near that of himself
prior to TBI onset, Tiana no longer found herself in this ambiguous state. She was able to return,
for the most part, to her role as daughter and her father progressed to a position of general
independence. Boss (2007) postulated, “When loss combines with ambiguity, there is no closure
and the rupture continues until a perceptual shift restores relations, meaning, and hope” (p. 108).
For Tiana, the perceived potential for loss during the time when she was unsure of her father’s
prognosis was reduced as he regained functioning. Michael, Andrea, Jessica, Allison, and Ruth

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remained in a state of rupture, as there had yet to be a full restoration of relationships, meaning,
and hope.
The seven assumptions. Boss (2007) posited seven assumptions of ambiguous loss
theory that “represent key elements underlying the theory” (p. 107). The following section will
assess the fit of the experiences shared by those family members involved with the current study
to each of the seven assumptions.
A psychological family exists, and that this perceived construction of one’s family may
differ from the physical or legal family structure. The first of Boss’s (2007) assumptions was
not explicitly assessed in the current study. None of the individuals who shared their experiences
explicitly identified who was included in their perceived construction of family. Each participant
did, however, include individuals such as children, grandchildren, siblings and parents when
discussing familial considerations as it pertained to having a family member with a TBI. No
non-genetic family members were mentioned, although this does not rule out the possibility of
their inclusion. The current study supports the first assumption through informal references to
individuals within the family who were a part of their experience of having a family member
with a TBI.
Ambiguous loss as an external situation is assumed to be neutral. The experiences
shared in the current study support the second assumption. The phenomenological methodology
utilized served to ascertain the perceived impact of ambiguous loss and boundary ambiguity of
each family member’s experience. Aside from the initial diagnostic and evaluative assessments
that were conducted at the beginning of treatment for the individual with a TBI, no family
member reported the results of standardized tests. Rather, they conveyed how the experience

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was influenced and informed by their interpretation or perception of the impact that the TBI had
on their family member, and the family system as a whole.
Cultural beliefs and values influence a family’s tolerance for ambiguity and how it is
perceived. The current study sought to establish an environment that was comfortable for the
family members who participated. Phenomenological inquiry is based heavily in the ability to
establish relaxed and safe conversation. Rather than focus on specific demographic criteria, the
researcher developed a rapport with the family members involved. It is believed that by doing
so, the researcher was able to gain much richer data regarding the family member’s experience of
having a family member with a TBI. Unfortunately, this precludes the current study from wholly
assessing the application of Boss’s (2007) third assumption regarding the influence of cultural
beliefs and values on a family’s tolerance for, and perception of, ambiguity. The only person to
volunteer information regarding their cultural background was Tiana, who is of partial Korean
descent. It can be hypothesized that this may have influenced her reaction toward her father’s
TBI, as she was the only participant who felt as if there were minimal residual changes to her
father but this would remain conjecture at most. The study as a whole cannot provide support for
this assumption due to a lack of data.
With situations of ambiguous loss, truth is unattainable and thus relative. Particularly
towards the beginning of the experience, family members who participated in the current study
shared that although they were able to gather general information regarding brain injuries, from a
variety of sources, the prognosis for their family member with the TBI remained a mystery.
Doctors were unable to answer questions regarding the injured family member due to the
convoluted nature of the injury and the numerous factors that, over time, could influence
recovery and rehabilitation.

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Family members who did not have a TBI, instead, developed their own meanings and
interpretations of the traumatic event on the impacted family member and the family system as a
whole based upon their perceptions. Due to the evidenced cycle of hope and distress illustrated
in the experiences of the individuals involved in the current study, these meanings and
interpretations were constantly in a state of evaluation and change. The current study also
provided insight, through the inclusion of two mother/daughter dyads, as to how perspectives
within the same family may vary by individual family member and how that individual perceived
the impact of the TBI on their family member, independent of how another family member feels.
The dyads of mother and daughter shared their unique experiences to having a husband or father
with a TBI, all of which displayed the relativity of the experience and independent meaning
making. The experiences shared in the current study provide support for the fourth assumption
of ambiguous loss theory.
Ambiguous loss is inherently a relational phenomenon and thus cannot be an
individual condition. Ambiguous loss theory aids in understanding the relational processes
within family systems that are altered through the intrusion of ambiguous loss. The fifth
assumption of this theory is that ambiguous loss is not a problem within the family system or the
ability to relate to the members within it, but rather the consequences of an outside influence.
When a family member has a disabling condition, the outside influence is the disability. As in
the current study, the outside influence is the TBI. Each family member experienced relational
and individual sequelae that may have included emotional or behavioral symptoms until such a
time that the outside influence, or TBI, was reframed in a way where the family was able to
regain meaning and coherence.

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Five of the six people who participated in the current study all meet Boss’s (2007) fifth
assumption. Michael, Andrea, Jessica, Allison and Ruth, all reported experiencing long-term,
perpetual emotional and cognitive distress as a direct result of their family member’s TBI.
Considerable personality change in the person with the TBI, convoluted by the vacillation
between hope and disappointment regarding prognosis, rendered these five family members
unable to reframe their experiences and regain family cohesion just yet. Until such a time, they
may remain in a position where their distress will continue. Tiana, however, was able to reassess
her situation following her father’s perceived improvement and return to near total
independence, and has allowed her to reframe this experience into one of growth and love.
There is a natural resiliency in families. This assumption was not explicitly addressed
in the current study. The experiences shared by all six family members, however, illustrated
various facets of resiliency including a renewed commitment to the family as a whole, the
redistribution of roles and responsibilities, and the ability to step beyond wrongs that may have
occurred in the past between them and the person with the TBI in order to attain better overall
care. In addition, many of the family members involved in the study engaged in a variety of
emotional expressions that did not put the individual with the TBI in any position of risk or
retribution for resentment. The experiences shared in the current study presents support for the
assumption of a natural resiliency in families, despite having not deliberately addressed it in the
line of interview questioning.
A phenomenon can exist even if it cannot be measured. The TBI literature has posited
that it is not the clinical measurements that inform family adjustment to the injury, but rather the
extent to which family members of individuals with a TBI perceive the TBI to have affected the
family member and the family system as a whole (Kosciulek, 1997; Muir & Haffey, 1984;

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Stebbins & Pakenham, 2001). Data regarding ambiguous loss has predominantly been gathered
through qualitative means such as interviews. Boss (2007) advocates for a quantitative method
of data collection, however. Experiences of the family members involved with the current study
often include specific situations and emotions that may not be socially accepted, and may result
in a socially motivated need to hold them in secret. This can serve as a hindrance to those trying
to measure or determine their existence. The seventh assumption is supported in the current
study. Despite whether or not ambiguous loss is quantifiable, it still exists within the qualitative
realm of experience.
Considerations for the theory. The experiences shared within the current study
supported six of the seven assumptions of ambiguous loss theory: 1. A psychological family
exists, and that this perceived construction of one’s family may differ from the physical or legal
family structure; 2. Ambiguous loss as an external situation is assumed to be neutral; 4. With
situations of ambiguous loss, truth is unattainable and thus relative; 5. Ambiguous loss is
inherently a relational phenomenon and thus cannot be an individual condition; 6. There is a
natural resiliency in families; and 7. A phenomenon can exist even if it cannot be measured
(Boss, 2007). The support for the application of ambiguous loss theory to the familial
experience of TBI is established through the alignment of the experiences of those involved in
the current study to the posited assumptions (Boss, 2007) and attributions of stress when engaged
in ambiguous loss (Boss, 1999; as cited in Price, Price, & McKenry, 2010).
When deliberating on the application of ambiguous loss theory to the familial experience
of TBI, inclusion criteria should be considered. That is, this theory may not be appropriate for
family members of those people with a moderate to mild TBI, or those who have made
substantial rehabilitation gains. As with the experience of Tiana, family members of such

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individuals may experience boundary ambiguity, but the current study does not support the
possibility that they would experience ambiguous loss as defined in the literature.
Summary. Ambiguous loss theory is particularly well suited for application to the
familial response to a TBI within the family unit due to the unique and irreconcilable nature of
the condition. As has been illustrated within the current study, the ambiguity surrounding the
experience interferes with adaptation, often producing depression and conflict (Betz &
Thorngren, 2006; Blieszner, et al., & Winston, 2007; Boss, 1999; Boss, 2002; Weiner, 1999).
Patrick-Ott and Ladd (2010) posited that in studying parents of children who had been born with
a disability “feelings of loss and disappointment are revisited throughout the child’s life span as
the child grows, matures, and yet is unable to master age-appropriate developmental milestones
or experiences” (p. 76). The current study supports the extension of this observation to adult
persons with a TBI and their family members.
As with ambiguous loss, the insertion of a TBI into the family system not only disrupts
family functioning, it also results in a lack of clarity regarding who is “in” and who is “outside”
of the family and regarding the designation of appropriate roles for each family member (Price,
et al., 2010, p. 9). Boss (1999) posited that ambiguous loss is highly stressful and attributed such
levels of “stress to the following factors: (a) People are unable to problem solve because they do
not know whether the problem is final or temporary; (b) the ambiguity prevents people from
adjusting by reorganizing their relationship with the loved one; (c) families are denied social
rituals (e.g., funeral, death certificate) that usually support a clear loss; (d) friends/neighbors tend
to withdraw rather than give support; and (e) ambiguous loss may continue for a long time;
therefore, those who experience it become physically and emotionally exhausted” (as cited in

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Price, Price, & McKenry, 2010, p. 9). The current study supports all of the listed characteristics
pertaining to ambiguous loss and the stress it creates within the system.
Limitations
The current study had several limitations that should be considered prior to the interpretation and
application of results. As a qualitative study of phenomenological methodology, the results
contained within this manuscript are not generalizable to all family members of persons with a
TBI, but rather are the unique experiences of six family members that have several aspects of
their experiences in common. Moustakas (1994) ascertains that it is the inconsistencies across
shared experiences that add authenticity and credibility to the study.
The interpretation of the results were developed by the researcher following a period of
bracketing, in an effort to allow for focus to then be directed to the experiences of the family
members involved in the study. The interpretations were discussed with a faculty member in an
effort to consider alternatives. It cannot be guaranteed, however, that the researcher was devoid
of all pre-understandings as they pertained to a personal experience with familial TBI. Although
pre-understandings are understood within the phenomenological literature as being inherently
part of individuals in the world, it should be noted nonetheless.
The demographic diversity of the individuals involved in the current study was limited in
a number of areas. Despite having a large variation in the age of the family members involved,
all but one of the six participants was female. In addition, for all of the family members
involved, the person with the TBI was either a husband or father. The current study provided no
insight on how the sex of the family member with or without the TBI altered or affected the
individual experiences and perceptions. Stereotypically, women provide more of a caring and

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relationship focused approach to the family. It is possible that if the mother or wife had been the
person to incur the TBI, that recollection of the experience by family members who were not
injured could have been dramatically different from those that were shared in the current study.
Additionally, if the family members within the present study were more balanced with regard to
gender, greater insight may have been provided into the impact on the father/son dichotomy and
relationship. Furthermore, the intention to establish a comfortable, safe environment that was
conducive to a discussion of sensitive content precluded the collection of information pertaining
to race/ethnicity or socioeconomic status. These influences may play a role in the interpretation
and adaptation to having an individual with a TBI in the family system, however the current
study was unable to assess for this.
Although each experience of the six shared experiences were unique and provided
valuable insight, two mother/daughter dyads representing two distinct families were of those
interviewed. Of the six individual experiences, four pertained to two people with a TBI. This
may have limited the breadth of the experiences shared. Conversely, however, including the
dyads may have provided greater insight into the variability of the experience when seen from
different relational standpoints. As with all experiences, time may have influenced the way in
which the events are remembered or interpreted. Interviewing two people from the same family
regarding the same event seemed to provide experiences mitigated, in part, by developmental
stages, difference in relational expectations, and overall maturation
Each individual that participated in the current study was recruited from a mid-Michigan
brain injury rehabilitation facility. The current study limited participation to those individuals
who had a family member incur a TBI within three years of the date they were interviewed. This
criteria was applied because it was believed this small time window would allow for a more fresh

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and raw recollection of pertinent emotions and experiences. The three-year time-frame since
onset also functioned as a method to reduce the influence of any care the family members may
have received at this facility or other outside sources (e.g., therapy). As each person reacts,
perceives, and interprets their own timetable in their own way, this was not necessarily
guaranteed in the current study. The potential remains that a family member of someone with a
TBI that was incurred longer than three years ago may share experiences that are similar to those
family members who are within three years of onset. It is also possible that those family
members who are involved in available support groups are characteristically different
socioeconomically or in their personality from those that do not, or cannot, attend. A greater
variation in recruitment locations and time since onset would have allowed for a more
representative representation.
Despite limitations, this study and the experiences shared by those involved provoked
what has been coined as a ‘phenomenological nod’, by the researcher. Van Manen (1997) stated
that “a good phenomenological description is collected by lived experience and recollects lived
experience-is validated by lived experience and it validates lived experience” (p. 27). The
description developed in the current study validated the personal experience of the researcher,
who also has a family member with a TBI. This process is also referred to as the “validating
circle of inquiry” (van Manen, 1997, p. 27). Phenomenological validity was achieved in the
current study as the essential description of the experience was identified within and across all
six individual recollections. In accordance with Giorgi (1988), “If the essential description truly
captures the intuited essence, one has validity in a phenomenological sense” (p. 173).

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Implication for Practitioners
The current study has provided insight regarding the familial experience of TBI that may benefit
practitioners in effectively addressing family coping and adjustment needs. Support for
ambiguous loss theory was identified through the alignment of the experiences of the six family
members involved in the present study to Boss’s (2007) seven assumptions and stress level
attributions (1999; as cited in Price et al., 2010). Although there remains a need to evaluate this
application more extensively, in addition to quantitatively, it is important to acknowledge the
potential for the development of an appropriate grief model based on ambiguous loss theory. In
doing so, clinical practitioners can begin to better serve family members during acute care, and
to provide greater long term support following discharge, resulting in potentially greater coping
and adaptation outcomes.
Oddy and Herbert (2008) identified the importance of medical staff having an
“understanding of why family members react as they do and of the possibility and causes of
friction between staff and families” so that practitioner behaviors and actions are informed and
do not create a rift in the partnership (p. 443). There is strong support within the TBI literature
and in the present study for the postulation that it is not clinical assessment results that predict
family needs, but the family members’ perception of the person with the TBI’s functioning
(Serio et al., 1995). Seeking to understand the experience of the family has also been posited to
increase “the possibility of alleviating their suffering” (Jumisko et al., 2007, p. 365).
It remains possible that the experience of grief and the feelings of “holding on” may be
an appropriate reaction to the experience of having a family member with a TBI, in addition to
other disabilities or experiences. For some, it may be that to muster up the strength to face the

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coming day is the best that they can do with the emotional resources that they have available to
them. Practitioners, rather than focusing on moving beyond the emotions associated with the
experience as it pertains to the family members of a person with a TBI, may benefit from rather
establishing a sense of manageability while the family member is actively experiencing the
emotions. Due to the significant role that the family plays in transitioning the person with the
TBI from the hospital to the home, and then to the general community, it is critical that the needs
of the family be addressed effectively and expeditiously (Turner et al., 2007).
The existing TBI literature, in addition to the current study, have underscored the
importance of ensuring that clinicians and practitioners have a strong understanding of what the
familial experience is when another family member has incurred a TBI as an adult. There is a
distinct need for family members to receive greater and longer continuing support at the
beginning of, during, and following, acute care for the person with the TBI. Education and
training should be provided to practitioners, counselors, social workers, and all other members of
the care team in a variety of areas pertaining to this experience. One of the most important of the
aforementioned areas is the impact of how society perceives and judges a person who feels that
their family member with a TBI is “gone,” on psychosocial health, wellbeing, and coping. With
professional communities permitting the opportunity for family members to feel as though they
are not alone in their experience or their subsequent interpretations of it, while also being
validated by medical staff, steps toward coping and adjustment to the TBI of their family
member may be perceived as more readily and easily feasible. Other supports such as day care
programming for the person with the TBI where the family member is able to continue to work
or take time for themselves, or weekly assistance with household tasks so the family member
does not become overwhelmed with the additional roles and responsibilities, may also be a

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valuable method by which to support the family. Psychoeducational support groups would
provide family members with peer support, accountability, and a safe environment to discuss
personal experiences free from societal judgement as to whether their grief is acceptable or not.
Insight into family members’ thoughts and feelings can provide. The current study provides a
glimpse into the experiences of six family members, in addition to interpretations and analyses of
those experiences, to inform practitioner interactions and treatment of family members to those
persons with a TBI.
Recommendations for Future Research
The current study identified several gaps in the TBI literature as it pertains to the familial
experience. While this study provided a number of areas where family members may experience
fear, there is little documented within the literature. Short of acknowledging that fear is a critical
component to the familial experience of TBI, there remains a need for greater understanding
regarding what specifically within the experience creates fear. In addition, the same need exists
regarding the specific areas where family members feel they need to discard or significantly alter
established plans for the projected future. In doing so, future research could inform more targeted
interventions for familial adjustment to a TBI.
Ergh et al. (2002) posit that those caregivers who do not receive adequate social support
feel increasing distress as time since disability onset accrues. There remains a gap in the
literature regarding the specific methods of emotional expression and protection. The current
study provided a small number of practices. However, if the intention is to decrease the distress
experienced a better understanding of the range of specific coping practices needs to exist. In
doing so, the areas and methods by which family members of persons with a TBI seek support

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and protection can be identified, informing the development of and subsequent interventions.
Research that results in the development of interventions for family members of individuals with
TBI specific to the renegotiated role changes and re-integration of the injured family member
may also further aid in the mitigation of psychosocial distress.
Although there is strong support for the application of ambiguous loss theory to the
familial experience of TBI, there remains one assumption that the current study did not evaluate:
3. Cultural beliefs and values influence a family’s tolerance for ambiguity and how it is
perceived. Although a strong argument can be established for the application of ambiguous loss
theory from the six assumptions that were supported, additional research that addresses the
impact of cultural beliefs and values on the familial experience of TBI may provide a greater
acceptance and adoption within the clinical environment.
Conclusion
Approximately 1.365 million of individuals who acquire a Traumatic Brain Injury (TBI) are
treated and released from an emergency department (U.S. Department of Health and Human
Services, Centers for Disease Control, National Center for Injury Prevention and Control, 2010).
Those family members of a survivor of a TBI are posited to be equally impacted, if not more so,
then the person with the TBI. The high likelihood of the psychosocial adjustment and coping of
the family as a system, and individually, affecting the person with the TBI makes this area of
research pertinent (Dausch & Saliman, 2009; Oddy & Herbert, 2003).
The purpose of the present study was to explore how immediate family members
describe, and what is the meaning of, the experience of having an adult family member with an
acquired TBI within the first three years. Six participants, all of whom had an immediate family

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member who had a TBI within the last three years, had regular contact with the injured family
member, and were 18 years of age as of their interview, were recruited from a mid-Michigan
brain injury rehabilitation facility. Although each experience was unique with regard to how it
was felt and encountered, six areas were experienced across all six accounts. Those areas were:
(1) an abrupt onset requiring necessary and rapid response, (2) the multiform manifestations of
fear, (3) the significant role changes within the family system, (4) the diverse practices for
emotional expression and protection, (5) the depth to which grief is experienced, and (6) the
immutable alterations to established plans for the future. The sudden onset of the TBI in their
family member caused an immediate need and pressure to react accurately with both answers to
questions, and informed decisions regarding care. Fear of the ultimate outcome, including death,
of their injured loved one became a prominent focal point of worry in the early days of the TBI
experience. As the family member with the TBI returned home, changes in roles and assigned
tasks within the family were experienced often resulting in the disruption of the family system or
resentment from needing to take on more than they could handle.
Family members without the TBI engaged in practices where they could express
themselves emotionally by utilizing physical exertion, competition, support systems and religion.
Some had also chosen to engage in behaviors that allowed them to briefly distance themselves
from the reality of living with, and being related to, a person with a TBI. Grief was experienced
as the uninjured family members recalled who the person was prior to TBI onset but is no longer.
Loss of expectations, loss of hope, perceiving who the person was in an idealized fashion, and
seeing the family member with a TBI as being someone “new”, were all common experiences.
As thoughts turned to the future and any future plans that the family had made together prior to
TBI onset, attitudes of hope and anticipation quickly turned to those of exasperation,

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disappointment, or loneliness. Those family members of persons with a TBI may have felt that
they have lost their partner or protector, cannot manage to accommodate the TBI in what was
previously planned, or that the future is bleak, definite and limited for both the person with the
TBI and their family. Feelings across this experience ranged from “scared”, “reminiscent”,
“overwhelmed”, “depressed”, and “isolated”, to “pride”, “amazement”, “hopeful” and
“accepting.” It is important to note that the level to which roles change, grief is felt, and future
plans are altered, appears to be related to the extent of behavior, personality, physical ability and
appearance, and/or emotional changes of the individual with the TBI from before onset to after.
With regard to the present study, the postulation that neither injury severity nor functional
outcome is significantly related to caregiver distress nor overall family functioning was not
supported (Kreutzer et al., 1994a).
Several areas of the experience of having an adult within the family who incurs a TBI are
not unique to the disability of TBI, however. There remains universality to the experiences
shared. With any life threatening accident or illness, most of those in the immediate family will
seek to react swiftly and accurately, pressuring themselves to act in the best interest of their
injured family member. During acute treatment and throughout the rehabilitation period
following, fear regarding the prognosis of their injured loved one may be present and various
avenues for emotional expression and protection may be engaged in. Considerable changes to
the roles that each family member embodies must be made when any significant disability is
introduced into the family system. As significant disabilities may affect the personality, physical
ability and appearance, emotionality and behaviors of those persons who have them, future plans
may need to be drastically altered to accommodate new needs or discarded altogether. The
temporality, or lived time, and relationality, or lived human relations, of family members to an

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adult with a TBI may parallel those experienced by family members of an adult with a different
significant disability.
It is within the area of grief pertaining to TBI where the uniqueness of the experience is
captured. For family members of persons with a TBI who have had radical changes in various
areas of their life, the experience is of great distress. These family members are looking at a
person who may look very much like the person they once knew, but most interactions with this
person following TBI onset nullifies their presence. Allison highlighted this finding when she
commented, “It’s sort of like he died but his body is still here.” This emotional purgatory
created a struggle within the uninjured family members as they attempted to reconcile who this
person in their family was prior to, and now is following, their TBI. Society would look down
upon those who say that the person with the TBI was “dead” or “gone” with regard to their
personhood, and subsequently move on with their lives. For some family members, however, it
may be incomprehensible to engage in day-to-day life with an individual who was once your
partner, parent or spouse. Spouses may find themselves recalling their wedding vows where they
committed to the marriage with phrases such as “till death do us part” and “in sickness and in
health.” No one plans, however, for a TBI to enter into consideration when planning for a future
with your spouse and family. Traumatic brain injury (TBI) remains, one of the most jarring of
the significant neurological disabilities with regard to the impact it has on the person who
sustained it and how that impact proliferates throughout the family system.
The experiences shared within the current study supported six of the seven assumptions
of ambiguous loss theory: 1. A psychological family exists, and that this perceived construction
of one’s family may differ from the physical or legal family structure; 2. Ambiguous loss as an
external situation is assumed to be neutral; 4. With situations of ambiguous loss, truth is

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unattainable and thus relative; 5. Ambiguous loss is inherently a relational phenomenon and thus
cannot be an individual condition; 6. There is a natural resiliency in families; and 7. A
phenomenon can exist even if it cannot be measured (Boss, 2007). The support for the
application of ambiguous loss theory to the familial experience of TBI is established through the
alignment of the experiences of those involved in the current study to the posited assumptions
(Boss, 2007) and attributions of stress when engaged in ambiguous loss (Boss, 1999; as cited in
Price, Price, & McKenry, 2010).
Inclusion criteria should be considered when applying ambiguous loss theory to the
family members of persons with a TBI. Specifically, family members of those people with a
moderate to mild TBI, or those who have made substantial rehabilitation gains, may not benefit
from interventions or models based upon this theory. Areas for further research have been
identified including specific areas in which family members of a person with a TBI may
experience fear and changes to future plans, a better understanding of the range of specific
coping practices, and the impact of cultural diversity on the fit of ambiguous loss theory to the
familial experience of a TBI in an adult family member. Most importantly, the current study
provides a glimpse into the experiences of six family members, in addition to interpretations and
analyses of those experiences, to inform practitioner interactions and treatment of family
members to those persons with a TBI.

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APPENDICES

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APPENDIX A
RESEARCH PARTICIPANT INFORMATION AND CONSENT FORM
Research Participant Information and Consent Form
Study Title:
Researcher and Title:
Department and Institution:
Address and Contact Information:

Family Members’ Initial Experience of Having an
Adult Family Member with a Traumatic Brain Injury
Erica L. Wondolowski, Doctoral Candidate
Department of Counselor Education, Psychology and
Special Education, Michigan State University
456 Erickson Hall
East Lansing, MI 48824
wondolo1@msu.edu
860-634-6446

You are being asked to participate in a research project. Researchers are required to provide a
consent form to inform you about the study, to convey that participation is voluntary, to explain
risks and benefits of participation, and to empower you to make an informed decision. You
should feel free to ask the researcher any questions you may have.
Purpose of the Research. I am interested in studying the ways that family members respond
when learning that someone in their life has acquired a traumatic brain injury. I’d like you to be a
part of my study because you have someone in your life who has been diagnosed with a
traumatic brain injury and are located within the mid-Michigan area. The main criteria for
invitation is interest on your part in talking about this event in your life and the experiences that
surround it. This study will only require no more than a one time, hour and a half commitment.
I plan to collect data by audio-recording our conversation together, so I can really understand
your experience better and ensure that I do not miss any of the important details. Data-collection,
for me, involves conversations. So most of my data will be in an interview format.
What You Will Do. In this study, we will meet once. During this meeting we will talk about the
moment when the impact of the traumatic brain injury of your family member first became
apparent to you. I may take field notes in addition to audio-recording our conversation, and make
transcriptions of those recordings.
Potential Benefits. It’s very important to me that you find our conversation helpful, interesting,
and beneficial – particularly as it relates to your processing this poignant event. Before I was a
researcher and doctoral student, my mother acquired a traumatic brain injury at the age of 47. It
is my hope that through our interaction that you will find peer support.
Since I view research as best emerging out on ongoing and mutually beneficial relationships, I
will strive to negotiate with you the way in which the study is conducted. That is to say, I will
want to hear and discuss experiences that you find important. Of course, there are particular
ideas and themes I want to study. Therefore, I view our potential relationship as maturing, and
subject to renegotiation, so as to ensure that the study benefits you as well as me.
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Finally, you should note that there is no financial compensation for participating in this study.
Potential Risks. In every human relationship, there are risks: these include hurt feelings, being
let down by the other person, and misunderstandings. Additionally, within a research context,
there are additional risks. There may be times where I inadvertently ask you a question you find
too personal, or uncomfortable. You never need to answer a question or talk about a topic that
you do not want to talk about.
Privacy and Confidentiality. The data for this project will be kept confidential. In any written
texts I keep, I will use pseudonyms for all persons – including you – so that your actual name
will never be used. When we meet to talk, we will be in an environment in which you feel
comfortable and private.
Any information you share with me will be kept confidential to the maximum extent allowable
by law.
All data for the project will be stored in a digital format – either written files on my laptop, or
digital audio files, which I will immediately transfer over to my laptop, and delete from my audio
voice recorder. My laptop is password protected, and I never leave it lying about in public
places.
The only persons who will have access to this data are you, me, my Dissertation Committee, and
members of the Institutional Review Board (an agency that monitors the protection of research
participants).
The results of this study may be published or presented at professional meetings, but the
identities of all research participants – yourself included – will remain anonymous.
For our meeting I will want to audio-record you. I will double check with you that this is okay
when we meet.
Your Rights to Participate, Say “No,” or Withdraw. Participation in this research project is
completely voluntary. You have the right to say “no” at the time of invitation, or any time
thereafter. You may change your mind at any time and withdraw from the study. You may
choose not to answer specific questions or to stop participating at any time. Choosing not to
participate or withdrawing from this study will not make any difference in your relationship with
me or any support group or rehabilitation facility.
Costs and Compensation for Being in the Study. There may be minimal costs associated with
the study, such as those associated with driving to the chosen location to meet.
Contact Information for Questions and Concerns. If you have concerns or questions about
this study, such as scientific issues, how to do any part of it, or to report an injury, please contact
me (Erica Wondolowski, Michigan State University, Department of Counselor Education,

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Psychology and Special Education, 456 Erickson Hall, East Lansing, MI 48824, 860-634-6446,
wondolo1@msu.edu).
If you have questions or concerns about your role and rights as a research participant, would like
to obtain information or offer input, or would like to register a complaint about this study, you
may contact, anonymously if you wish, the Michigan State University’s Human Research
Protection Program at 517-355-2180, Fax 517-432-4503, or e-mail irb@msu.edu or regular mail
at 207 Olds Hall, MSU, East Lansing, MI 48824.

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APPENDIX B
INTERVIEW PROMPT

Interview Prompt


Can you describe to me what your original thoughts, experiences and reactions were
when you first began to see the impact the Traumatic Brain Injury (TBI) had on your
family member?

Potential Follow-Up Questions Include:


How old were you when your parent acquired their traumatic brain injury?



How old was your affected parent?



Were there any differences in behavior, emotions, and/or conversation from before
the accident to after?
o If so, do you feel that one area was more impactful to you than the others?



Can you discuss the emotions you experienced and what motivated them, when you
first began to see the impact of the traumatic brain injury on your parent?



Was this your first experience with traumatic brain injuries?



How long ago did the injury occur?



How did the injury occur?



What was your relationship like prior to onset?



Can you recall your last contact with your family member prior to the onset of their
traumatic brain injury?

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