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Literature Review Sample

©WWWriters / J.Kaminski
No duplication allowed (this is an excerpt!)

"The Effect of the Level of Impaired Self Awareness
(Anosognosia) on Quality of Life in Individuals
with Post Traumatic Brain Injury"


Traumatic brain injury (TBI) is the most frequent cause of death in American people younger than age 45 (Jorge, Robinson, and Arndt, 1993). Acute and chronic medical treatment for head injury costs an estimated four billion dollars annually, in the United States alone (Sosin, Sniezek and Thurman, 1996). Damage to the brain due to trauma can have far-reaching implications for patients and their families. Depending on the brain area affected, a diverse variety of cognitive and behavioral deficits are possible (Burns, Kappenbrug, McKenna, & Wood, 1994). “Selective disorders of language, perception, attention, memory, action, planning, and spatial orientation have all been described and analyzed extensively in the neuropsychological literature” (McGlynn & Schacter, 1989, p. 143). These disorders can have a profound impact on a person’s ability to function in day-to-day living (Cifu, Kreutzer & Marwitz, 1996). Surprisingly, a large number of TBI sufferers seem unaware of their disabilities. These deficits are usually clinically evident, and very obvious to the TBI patient’s family, work colleagues, and health care providers. This lack of awareness can have serious repercussions for rehabilitation and recovery. TBI can be manifested as mild, moderate, severe, and extremely severe (Kraiuhin, Shores, & Roberts, 1996; Costa, 1988). Even a “mild” or “minor” brain injury can cause subsequent symptoms that involve deficits in several areas of functioning, including physical, cognitive, and psychological (Feinberg, 1996; Dikmen, McLean & Temkin, 1986).

The majority of brain injuries are classified as “mild”, estimated at 70 to 90 per cent of all TBIs (Segalowitz & Lawson, 1995). “Some patients may not become aware of, or admit, the extent of their symptoms until they attempt to return to normal functioning” (Kay, Harrington, Adams, Anderson, Berrol, Cicerone, Dahlberg, Gerber, Goka, Harley, Hilt, Horn, Lehmkuhl & Malec, 1993, p. 87). Several factors impact on the recognition of brain injury in trauma patients, especially ones who sustain “mild” injuries to the brain. If no loss of consciousness is evident, and neurological assessment appears normal, brain injury may go undiagnosed until much later (Feinberg, 1996). Segalowitz and Lawson, (1995) found that adolescents with a history of mild head injury often suffered long-term effects of attentional deficits and learning problems, sleep disturbances, speech and language disorders, depression, and social dysfunction.

Hillier and Metzer, (1997) explained that awareness or insight is considered an important factor in successful rehabilitation of TBI of all degrees. These authors found that many TBI patients expressed awareness of the physical deficits caused by the head injury, but did not recognize the emotional and cognitive side-effects. This polarization towards the physical does seem natural, considering physical symptoms would be more visible and less prone to stigmatization. Another explanation is offered by Maslow’s Hierarchal Model of Needs, which proposes that one’s attention is first focused on meeting physical and physiological needs. Higher-order needs for social belonging, love, self-esteem, and self-actualization can not be attended to when physical needs are disturbed or unmet (Hillier & Metzer, 1997).

Most of the investigators featured in this literature review acknowledged that some form of neuroanatomical change has perpetuated TBI patients’ lack of self-awareness (McGlynn & Schacter, 1989). Brain damage from the trauma disrupts the normal functioning inherent in awareness, sometimes leaving patients oblivious to the seriousness of their neuropsychological deficits. Almost all mention that anosognosia is more common in right-brain damage, although it has been witnessed in patients with brain damage in other areas of the brain, but to a much lesser degree. The cerebral lesion or brain damage, most often in the right parietal lobe, seems to cause the body schema or image representation to be somehow disconnected from the patient’s awareness. Organic repression results, where the patient fails to recognize the alteration in their bodies, personalities, and behaviors. Quite often, these patients demonstrate normal intellectual functioning, despite the serious lack of self-awareness of their deficits or injury-related incapacities. Stuss (1991) elaborated that anosognosia could be viewed as a deficit in self- monitoring, often stemming from frontal lobe brain damage.

Other theorists postulated that anosognosia is a demonstration of using the psychological defence mechanism of denial (Weinstein, 1991). Anosognosia becomes a “drive to be well” or a means of self-protection against the realities of serious damage and alteration. McGlynn and Schacter (1989) concluded that no one theory provided a satisfactory description of the etiology of unawareness of deficits in TBI or other neuropsychological syndromes. These authors also clearly distinguished that defensive denial was not true anosognosia, since patients were often aware of their deficits, but repressed the knowledge in order to cope with their condition.

A lack of self-awareness regarding deficits can serve as a major obstacle to effective rehabilitation and reintegration of TBI patients (Fleming, Strong, & Ashton, 1996; Tepper, Beatty and DeJong, 1996). Awareness of impairment has been assessed mainly through self- perception reports from TBI sufferers, interviews with significant others and caregivers, and findings from objective clinical assessment and neurological measurement. Frequently, self- reports reveal evidence of denial or lack of awareness of the extent of the TBI-related disability. This may, in part, be due to actual physiological damage to the heteromodal cortex or frontal lobes. Other TBI patients may express some awareness of the change in their ability to think and function, but exhibit behaviors consistent with anxiety and/or depression (McGlynn & Schacter, 1989). Awareness of deficit may extend to manifest as anosognosia - where the patient verbally denies impairment (Hillier & Metzer, 1997). Reports from significant others often focus on the psychosocial impairment and personality changes evident in their loved one. Families may perceive the TBI member in a much different light, compared to self-reports of the patient, themselves. Often, families express a more accurate description of symptoms and side-effects of head trauma, yet they may not notice cognitive deficits, such as memory loss (Schacter & Prigatano, 1991). “Cognitive deficits that frequently follow head injury, such as memory impairment, poor attention span, and defective judgement, may contribute to the observed discrepancies between patients’ and relatives’ reports by rendering patients incapable of accurately reporting their difficulties” (McGlynn & Schacter, 1989, p. 171). In some families, though, explicit verbal denial of the patient’s deficits is expressed. The patient is perceived as no different from the pre-morbid state. Often, this denial by the family precipitates denial of symptoms and changes by the involved patient. McGlynn and Schacter theorized that this overt denial served as a coping strategy for both patients and families, when faced with an unacceptable and frightening reality. Denial then served as a mental defense mechanism which masked feelings of anxiety and hopelessness elicited in the drastic changes in the patient’s capabilities and functioning (Granger, Divan & Fiedler, 1995).

Clinical assessment can reveal a clearer picture of a TBI patient’s symptoms, but may express a stereotypic description of the individual’s post-trauma experience. In their 1997 study, Hillier and Metzer found that TBI patients reported a lower rate of physical impairment, compared to their families’ reports, as well as the clinical assessment done by the authors. Sherer, Bergloff, Levin and Oden (1997) found that TBI patients with more accurate self- awareness experienced better employment outcomes in the long-term.

When TBI patients are unaware of their condition, serious considerations are introduced (Newton & Johnson, 1985). McGlynn and Schacter (1989) correlated this unawareness with a lack of motivation to seek treatment; a failure to initiate compensating strategies; an inability to create or maintain realistic goals for rehabilitation; and a failure to benefit significantly from treatment. TBI patients who are aware of the changes in their ability to function often suffer from neurobehavioral changes, including cognitive impairment, apathy, aggressiveness, depression and other mood disorders (Jorge, Robinson, and Arndt, 1993). These authors found that 42.4 per cent of the TBI patients studied developed major depression during the first year, post-trauma. Jorge et al. applied the DSM-III-R diagnostic criteria to assess TBI patients for depression and mood disorders. The group of 66 subjects was divided into patients who reported the presence of depressive feelings (n=19), and patients who denied feeling depressed (n=47). All of the subjects who reported feeling depressed demonstrated more vegetative symptoms than the patients who denied depressive feelings.

How does the presence of anosognosia affect a post TBI person’s quality of life and recovery? Traumatic brain injury survivors and their family members face many challenges in daily living when learning to cope with the changes due to an injury. For the brain injury survivor, these challenges may be exacerbated by neuropsychological phenomena such as impaired self-awareness.

Definition of Terms

1. Anosognosia-
a deficit of self-awareness related to cognitive and behavioral impairments due to brain injury. Person seems unaware of any deficits in memory, language, perception, voluntary movement, and other general brain injury symptoms (Kihlstrom & Tobias, 1991). Refers to a lack of knowledge, awareness, or recognition of disease (McGlynn & Schacter, 1989).

2. Denial of Deficit -
A motivated reaction by a patient who is aware of the deficits in their condition, but who denies the disease as a defense mechanism (McGlynn & Schacter, 1989).

3. Depression-
Mood disturbance characterized by symptoms of sleep, appetite and libido changes, low affect, social withdrawal, hopelessness, worrying, suicidal ideation, self- depreciation, irritability, brooding, and loss of interest in activities of daily living (Jorge, Robinson, and Arndt, 1993).

4. Disability-
Any restriction or inability (resulting from an impairment) to perform an activity in the manner or within the range considered normal for a human being. (WHO, 1980).

4. Handicap-
Any disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfillment of a role that is normal for that individual, (WHO, 1997).

5. Impairment-
Any loss or abnormality of a psychological, or anatomical structure or function (World Health Organization (WHO), 1997).

6. Quality of Life-
a measure of the well-being of a person, assessed from both a subjective perceptual viewpoint and from physical, cognitive, emotional and behavioral functioning assessment criteria.

7. Post Traumatic Brain Injury Syndrome-
Post trauma symptoms, experienced after a mild to severe brain injury. Symptoms may include: impairment in attention, concentration, visual processing, memory, and judgement, depression, anxiety, irritability, dizziness, fatigue, insomnia, hearing problems, slurred speech, decreased libido, alcohol intolerance, headache, nausea and vomiting, and photophobia. (Feinberg, 1996, p. 12).

8. Self-Awareness-
A process which involves the integration of information from both external reality and inner experience. A capacity to perceive the self in relatively objective terms while maintaining a sense of subjectivity. Involves the interaction between thoughts (knowledge of a situation in an objective sense) and feelings (an appreciation or unique interpretation of the situation in a subjective sense). (Fleming, Strong, and Ashton, 1996).

Literature Review

Assessment of Traumatic Brain Injury.

In the United States, an estimated 200 people per 100,000 population suffer from some form of TBI each year. A resultant 500,000 individuals are hospitalized in U.S. facilities, with 30 to 50 per cent suffering long-term serious disabilities ( Morton & Wehman, 1995). “The majority of individuals who sustain TBI are young males between the ages of 19 to 25 in the early stages of establishing their independence in critical life areas including friendships, leisure activities, intimate relationships, residence, and employment” (Morton & Wehman, 1995, p. 82). This age group developmentally depend upon their peer group for social norms and for a sense of self-identification. TBI can abruptly disrupt this process, causing emotional distress and leading to feelings of depression. In long-term studies, Morton and Wehman (1995) reported the most common emotional sequence was a loss of friends and social isolation in chronic TBI patients. Family members of these young chronic TBI patients also reported high levels of anxiety and depression as a result of coping with their loved ones’ TBI deficits (Wade, 1992).

Fleming, Strong and Ashton (1996) described a three level model to assess self- awareness of deficit in TBI patients. The first level was awareness or knowledge of the injury- related deficits - the physical, cognitive, social, and emotional deficits apparent in the post- morbid period. The second level was awareness and subjective appreciation of functional deficits, such as impaired ability for independent living, work, and other activities of daily life. The third level was impaired awareness for realistic goal-setting and the ability to recognize one’s prognosis, and predict one’s future state and capacity for coping.

Level of impaired self awareness and Quality of life

Anosognosia was first recognized and named by Babinski in 1914, from observations of a peculiar lack of self-awareness of cognitive and behavioral impairments in patients suffering from left-sided hemiplegia and hemianopia. Anosognosia is often evident in TBI patients who demonstrate no signs of mental confusion, confabulation, or hallucinations (McGlynn & Schacter, 1989). There may be no other alteration in psychological functioning exhibited by a patient, aside from this unawareness of the deficits experienced from TBI. Even in cases of mild head injury, unawareness of memory and other cognitive, personality or behavioral deficits often exist. Some patients even exhibit euphoria in league with an unawareness of serious impairments.

“Several ways of investigating awareness and perceptions of impairments and disabilities have been previously reported, in particular by comparing the accuracy of self- perceptions with those of significant others (family and friends) and/or with the findings of clinical assessment” (Hillier & Metzer, 1997, p. 526). Goldberg and Barr (1991) pointed out that it was important to assess awareness from all angles, including cognitive and neuroanatomical. These authors explained that the breakdown of the awareness of deficit reflects the breakdown of the cognitive error-monitoring process. Patients may simply not be normally aware of the cognitive processes they engage in. It is not likely that a patient would have extensive awareness of post-morbid cognitive deficiency if it did not exist in the pre-morbid state. Error-monitoring can extend beyond cognitive functioning to include a total lack of concern about a drastically altered lifestyle, as well as personality and social aberrations, and vocational handicap. In addition, sensory impairment could diminish the cognitive feedback mechanism necessary for a patient to be aware of a deficit in cognitive functioning. Combined with cortical atrophy and damage to the frontal and/or posterior cortex of the brain, an anatomical explanation for the common occurrence of diminished awareness of sequential motor and perceptual difficulties can be derived (Goldberg & Barr, 1991; McGlynn & Schacter, 1989).

Goldberg and Barr (1991) asserted that anosognosia commonly occurs in right brain hemisphere damage, exhibited as a lack of awareness of higher-order cognitive and perceptual abilities, as well as sensory-perceptual processing. The authors qualify this view by pointing out, that even in the absence of brain injury, people are less likely to be aware of right hemisphere activities. McGlynn and Schacter (1989) supported this view, pointing out that self-reports of disability was much lower in right-sided damage than it was for patients suffering from left- sided or diffuse TBI. Right-brain damaged patients had “a greater awareness disturbance than others because of the specific nature of their cognitive impairment which involves perceptual problems and difficulty organizing information in relation to one’s self” (McGlynn & Schacter, 1989, p. 174). Often, left-hemisphere controlled cognition is more amenable to self-awareness in humans. Error-monitoring is a process that is usually done by the left hemisphere, since the right hemisphere is less capable of monitoring its’ own unique cognitive processes while engaged in such processes. Goldberg and Barr (1991) suggested that it would be extremely useful to compare a TBI patient’s awareness of deficits in non-verbal left-mediated (associative) with right-mediated (apperceptive) cognitive functions. The authors qualified their assumptions about self-awareness in brain disease, as tentative at best. Much more research is needed, to accurately pinpoint the mechanisms of anosognosia.

Kihlstrom and Tobias (1991) wrote that the phenomena of anosognosia raised interesting questions about human subjective awareness of the mechanisms of consciousness. The authors chose a non-neuropsychological perspective to study this lack of deficit awareness. They claimed that anosognosia, as a term, was essentially neutral, an unawareness of deficits, with no etiological affiliates. They described the parallel processing mechanism of cognitive functioning, which postulates that almost all information processing is an unconscious act, inaccessible to phenomenal awareness. Consciousness is not to be identified with any particular perceptual-cognitive functions such as discriminative response to stimulation, perception, memory, or the higher mental processes involved in judgement or problem-solving (Kihlstrom & Tobias, 1991). Consciousness is experiential, and does not need to be acknowledged for execution of most cognitive processes. Kihlstrom (1987) asserted that conscious awareness entails the interaction of a mental representation of an event with a mental representation of the self as perceiver. Self and context representatives are needed for conscious perception. “In conscious experience, thought, and action the mental representation of self is explicitly connected to whatever is being experienced, thought, or done” (Kihlstrom & Tobias, 1991, p.). The construct of self is the crucial element of conscious awareness. Thus, in anosognosia, the person does not consciously perceive the difference between what should be, and what is. They do not understand or recognize the deficits and disabilities that are apparent to others. Cognitive- behavioral deficits are not represented in phenomenal awareness. They lack the personal experience of incapacity. Kihlstrom and Tobias conclude with the suggestion that anosognosics should be self-rated on anxiety, depression, and other personality characteristics. They summarize that if these patients really had no cognizance of their deficits, they would score lower on other measures of suggested personality disorders.

Lewis (1991) explored distortions in awareness from a psychological perspective. From a psychoanalytic viewpoint, anosognosia could be seen as a form of denial, because awareness of the deficits would cause too much emotional pain and dissonance. Cognitive and perceptual impairment resulted, which were usually psychogenic in origin. This view suggested that anosognosia was a form of intricate denial, a way for someone to protect themselves, to enhance conscious pleasure and minimize the experience of pain or deficit. Denial served as a defense mechanism to provide the experience of adaptation to an unacceptable condition. A way to deter the formation of a conscious representation of a threatening reality event.

Lewis (1991) elaborates by outlining the implications denial can have in illness situations. Possible ramifications include misdiagnosis, misapplied treatment, noncompliance to treatment, and relapses may occur, even years later. Denial also provides a defense against depression and has been instrumental in providing hope to terminal patients with other illnesses, such as cancer (Lewis, 1991). Lewis concludes with the assumption that the greater the denial, the more threatening the illness and deficits.

Prigatano (1989) encouraged researchers to move beyond neurochemistry, neurophysiology, and neuropsychology when considering self-awareness in brain injured patients. From working with many brain injured patients, Prigatano concluded that anosognosics both perceived themselves as normal, yet also recognized an altered capacity to function, but were unable to express this recognition. He qualified frank anosognosia as often being a brief condition that resolves in a few weeks post-trauma. However, residuals of the condition could persist for years, afterwards. An estimated 40 per cent of TBI patients were reported by their families to have residual anosognosia, seven years after their initial brain injury.

Prigatano (1989) postulates that self-awareness seems to be evenly distributed throughout the entire brain, exerting a direct influence on brain activity. He described studies which suggested that TBI patients might be at risk for dysfunctioning of the heteromodal cortex and paralimbic cortex. The paralimbic belt region has been found to be important for interpreting the internal milieu of the body. The heteromodal cortex responds to multiple stimuli and interprets internal as well as external stimuli. The prefrontal areas of the brain are part of the heteromodal cortex, in close proximity to the paralimbic belt. “The integration of the rudimentary perceptions of the emotional relevance of a stimulus with the interpretation of the meaning of that stimulus may be precisely what has been substantially damaged by these injuries. The interface between interpreting and feeling is thus damaged by severe TBI” (Prigatano, 1989, p. 421). Prigatano proposed that this damage caused TBI patient to have an altered sense of self, both affectively and cognitively. Patients experienced a disruption in social and self-awareness but were at a loss to express and define this loss.

Stuss (1991) examined disturbance in self-awareness in patients with frontal lobe brain damage. Stuss emphasized that the frontal lobes are critical in the process of self-awareness and the monitoring of perceptions of reality. Stuss proposed two models to examine these disturbances. The first was a neuroanatomical model, to understand the clinical manifestations of behavior alteration after frontal lobe damage. The second was a psychological model of self and consciousness to try and understand the disturbances in awareness in the post-morbid recovery period. Stuss commented on how common the observance of unconcern, denial and unawareness of deficit was in frontal lobe TBI patients. Two themes seemed common across these studies, done by various researchers: a) a disturbance in complex active purposeful behavior, and b) a deficit critical attitude toward their condition. An absence of introspection or self-reflectiveness after frontal lobe damage was also reported (Stuss, 1991). The primary role of the prefrontal cortex is self-awareness or consciousness of self. With damage, a patient may lose awareness of self as a continuing and changing entity, reducing self-continuity. An altered view of time was another theme described by Stuss. He observed that frontal lobe damaged patients seemed to focus only on the concrete moment or present, with no regard for the past or anticipation of the future. This fact alone, helps to explain a disruption in self-continuity in these patients. Without a connection with the past, experiential knowledge and memories can not be utilized to interpret the present, nor project to the future.

Anatomically, consciousness has been localized to two different areas of the brain. “Accrued visceral consciousness of one’s individual identity was hypothesized as being located in posterior prefrontal regions. Higher self-awareness was correlated with more progressively anterior localization, with religious self-consciousness coexisting with intact frontal polar regions” (Stuss, 1991, p. 66). Stuss emphasized that self-awareness should be regarded as the highest of all brain activity from a hierarchical integrated brain organization perspective. Stuss further qualified his view by describing human beings as active, interactive entities who develop their future using the foundation of their past experiences. He attributed the frontal part of the brain with executive functions, that “explores, monitors, fixates, selects, shifts, modifies, and judges all nervous system activities. The frontal lobes are also extremely necessary when a new activity is being learned and active control is required” (Stuss, 1991, p. 68). In frontal lobe damage, the individual often exhibited disturbed self-awareness, with intact knowledge that was disconnected from frontal control functions. Rather than having a knowledge deficit, these people exhibit impaired judgement of the objective facts in relation to their own selves and their lives.

Stuss’s (1991) psychological view of frontal lobe injury was based on the work of William James, who described definite characteristics common to consciousness. Consciousness was personal and continuos, a stream of thought and beingness, with perceived feelings of warmth, intimacy, and immediacy. Consciousness is capable of metacognition - knowing that one knows something. Consciousness is reflective, capable of deliberate choice and selective attention, choosing to assign salience to events and experiences of its’own accord. Time plays a large role in the experience of consciousness. The past is important, since memories are crucial for a continued sense of self. Stuss (1991) found that TBI patients often reported an alteration in some past memories. Recalled facts lost their personal reference, with a loss of warmth and immediacy. Awareness of the future was equally important, providing a target for will projection, and lifestyle decisions. One of the most significant alterations in brain processing with frontal damage was the inability to use experiential knowledge to think about decisions for the future.

McGlynn and Schacter (1989) proposed a Conscious Awareness System (CAS) approach to understanding the genesis of anosognosia. This CAS is responsible for the experience of human remembering, knowing, perceiving, comprehending and phenomenal awareness. This system is distinctive from, yet interacts with other systems in the brain and nervous system responsible for language, memory, perception, sensation, and so on. Input to the CAS comes via output from these adjacent systems, which continuously presents data and information about the fluctuating state of the person’s various systems. The CAS is theorized to reside in the inferior parietal lobes of the brain and its connecting structures, extending across the posterior cortex. An executive system situated in the frontal regions of the brain, is linked to the CAS, and facilitates the initiation, organization, and monitoring of idea and action sequences. If brain damage interrupts this flow of information between the executive system and the CAS, the CAS remains in a baseline state of low activation, presenting no information about the brain’s altered activity. This model supports the observation that different types of anosognosia occur depending on the area of damage. Unawareness of specific perceptual and motor deficits occurs with parietal damage. Damage to the frontal brain areas is linked to unawareness of more complex deficits such as problem-solving, information retrieval and integration, and social, behavioral, and personality changes (McGlynn & Schacter, 1989).

How Depression may influence Quality of Life in TBI patients

Many TBI patients experience anxiety and depression as they attempt to adjust to the prognosis of their future quality of life, and ability to function (Godfrey, Knight & Partridge, 1996). Psychosocial and emotional adjustment is a key consideration in rehabilitation, for both the patient and the family or significant others. Malia, Powell and Torode (1995a; 1995b) described emotional and social problems as the most disabling of dysfunctions caused by TBI. Changes in personality function tended to be the most persistent deficit common to TBI patients, affecting all those around them. Common changes included: excessive fatigue, indifference, concentration and attention deficits, tension and anxiety, depression, irritability, impatience, lack of ability to anticipate future events, lowered ambition, rapid mood changes, a change in interpersonal relationship skills. Malia, Powell and Torode (1995b) estimated that 40 to 74 per cent of severely injured patients still exhibited psychosocial deficiencies several years post- injury. Patients who tended to approach life from a strong internal locus of control were found to exhibit less mood disturbances and depression in the post-injury recovery period. People who had an “easy-going” personality before their injury, tended to adapt more easily to TBI related deficits, and were less depressed than other patients who experienced more stress from the unfortunate event.

Mintz, Van Horn and Levine (1995) studied how developmental models of social cognition could be used in the assessment of family adjustment when a member suffers an TBI. Long-term upheaval was not uncommon in families in this situation, with symptoms such as emotional distress, psychosomatic symptoms, interpersonal friction, financial worries, and maladaptive role changes in all members. If developmental regression was evident in a TBI patient, the family often had more difficulty coping with the changes. Mintz, Van Horne and Levine tested 42 TBI patients and their families using a variety of tools, including the Beck Depression Scale and the Beck Anxiety Scale.

Fordyce, Roueche and Prigatano (1983) found that some TBI patients, especially ones who sustained a major head injury, become more emotionally dysfunctional and depressed over time, despite cognitive improvement. The authors administered the MMPI and the Katz Adjustment Scale to 160 TBI patients to test emotional adjustment. A series of other tests, including the Wechsler Adult Intelligence Scale Verbal and Performance IQs were also administered to test neuropsychological functioning. Half of the subjects were acutely diagnosed, the other half were chronic TBI sufferers, at least six months post-trauma. The two groups differed on both the MMPI and Katz Z-scores, with the chronic group showing much more evidence of emotional dysfunction. There were no significant differences, however, in neuropsychological functioning between the two groups. Frodyce et al, questioned if the increased emotional distress and depression in the chronic TBI patients was related to “enhanced awareness of residual deficits and problems in social adjustment which are not obvious to the patient during the acute period following trauma” (Frodyce, Roueche & Prigatano, 1983, p. 623). They surmised that affective problems common to chronic TBI patients often include anxiety and depression, unusual thought content, and social withdrawal.

Leach, Frank, Bouman and Farmer (1994) examined whether social support for TBI patients was predictive of depressive symptoms in the post - morbid period. They also looked at how changes in family functioning impacted on the TBI patient’s long-term recovery and adaptation. “Post-injury depression is hypothesized to be the result of a confluence of factors (i.e. hereditary, temperament, development, precipitating stressors, biological events, and current physiological status)” (Leach, Frank, Bouman, & Farmer, 1994, p. 600). These factors may work together to precipitate depressive states in the TBI patient. Satisfaction with social support, family coping strategies, and depression were measured by the authors. 73 per cent of the 39 subjects were at least mildly depressed, two were severely depressed and eight showed no depression. They found a correlation with the degree of social support sought by the family and the level of depression in the TBI patient. The measure of the family’s coping ability showed a significant negative correlation with the individual’s level of depression.

Morton and Wehman (1995) looked at the psychosocial and emotional patterns of TBI patients. They found that the majority of individuals with severe TBI sustained depressive qualities over the long-term. Since the majority of TBI patients are young males, aged 19 to 25, the disruption of newly-emerging roles common to young adulthood can have catastrophic emotional implications if patients are aware of what is happening. Dependency, loneliness, role disruption, loss of autonomy and free movement all impact on the young client, causing low affect, withdrawal, and depression.

Ruff, Camenzulis and Mueller, (1996) stressed the need to assess pre-morbid emotional risk factors to help TBI patients adapt safely and as stress-free as possible. Depression lasting more than six months can adversely affect the outcomes for TBI patients from a psychosocial and physical perspective (Olver, 1995). “Functional outcome is thought to relate to effective social supports and avoidance of depressive episodes” (Olver, 1995, p. 444).

Measurements of quality of life used effectively with chronic illnesses and Traumatic Brain Injury.

In 1980, the World Health Organization (WHO) issued the International Classification of Impairments, Disabilities, and Handicaps (ICIDH), a document that classified disabilities using a medical orientation. In 1997, the ICIDH-2 was published, which classified disabilities and deficits using a bio-psycho-social model for classification, emphasizing the universal nature of disablement. The classifications inherent in this document are used to identify the variety of disablements associated with various health conditions including diseases, disorders, injuries, and accidents (WHO, 1997). The new ICIDH is a synthesis of biological and social models of illness and functioning. Functioning and disablement are seen as outcomes of an interaction between a person’s physical or mental condition and the social and physical environment. The ICIDH was revised to better define health outcomes in terms of body, person or social functioning. The goal of the document was to characterize physical, mental, social, economic or environmental interventions that will improve the quality of life and levels of functioning of people afflicted with disablements.

The new classification reflects the move in global health care from acute, hospital-based care to chronic and long-term services in the communities where people live. The document provides an international common language to describe and classify the consequences of disease, disorders, injuries, and other health conditions. The ICIDH-2 is represented by four dimensions: impairments, activities, participation, and contextual factors; a total of 873 Impairment items, 617 activity items, and 106 participation items arranged in a “stem, branch, leaf” structure. Future directions for the ICIDH-2 are a) a link with quality of life initiatives b) identifying enabling responses of society to increase independence and choice c) improvements in the living conditions and quality of life of disabled people d) an awareness of and changes in social practices, such as a rejection of discrimination and stigmatization related to physical, mental or emotional deficits, e) full participation and equality of all people in all areas of life and f) a focus on the ‘lived experience’ of people with a health condition, impairment, or activity limitation. The ICIDH-2 does not classify persons, but rather the attributes and experiences of people as well as the situations and circumstances in which people find themselves.

Godfrey, Knight and Partridge (1996) proposed a stress-appraisal-coping (SAC) model of emotional adjustment to chronic illness including TBI. This model included both general and person-specific variables, which took into account that each patient and family is unique, and had different needs in therapy, support, and rehabilitation. “The SAC model hypothesizes that individuals experience emotional distress when they appraise their environmental demands as exceeding their personal and socially available coping resources” (Godfrey, Knight & Partridge, 1996, p. 30). TBI, like many diseases and injuries compromises the individual’s lifestyle, plans, goals, and values, sometimes in a devastating way. Feelings of stress is an expected response, if the patient is able to absorb that they have sustained a brain injury. Stress responses common in TBI adaptation are depression, low self-esteem, and defensive denial. “Denial of the functional significance of neuropsychological symptoms avoids recognition of associated losses” (Godfrey, Knight & Partridge, 1996, p. 33). Denial can help to preserve hope and optimism about recovery, especially in the immediate post-injury period. Mentally healthy people tend to distort reality at times, to enhance self-esteem, maintain belief in personal capacity and efficiency, and maintain a vision for their future. How a patient deals with the stress common to TBI depends on the individual’s patterns of coping with change, the social support system available to them, and their degree of awareness of what is happening to them. Coping is a dynamic process which changes as the appraisal or awareness of the problem or situation changes (Malia et al, 1995a). Malia and collegues (1995a) identified four key ways of coping, common to TBI patients: problem-focused coping, emotional-focused coping, avoidance coping, and wishful thinking. “Avoidance coping, wishful thinking and emotion-focused coping strategies all relate to poor psychosocial functioning, and seem to be inappropriate coping strategies in both the short and long term” (Malia, Powell & Torode, 1995a, p. 615). If a patient is not aware of the situation, the response to the stressors in TBI rehabilitation will likely be discreet, and may be non- existence. A patient may show no response to the repercussions of TBI. Often, TBI patients lack awareness of the true nature of their deficits, and may not exhibit emotional dysfunction until several months after the initial injury. Over time, insight or awareness of self occurs to some degree in most TBI patients. Repeated feedback from the environment both externally and internally may eventually make an impression on a patient, leading to a heightened realistic self- awareness.

A reasonable quality of life for TBI patients depends on healthy adaptation on at least three levels. Godfrey, Knight and Partridge (1996) identified these levels as: a) Somatic health, affected by neurochemical stress reactions, harmful coping behaviors, and an awareness of condition and adaptive behavior to deal with it b) Morale and Life Satisfaction - which required adaptation to the impact of the TBI on lifestyle, self-esteem and the patient’s outlook on life and c) Work and Social Living- which may necessitate a radical change in behavior and activity if the TBI is extensive. If societal and role expectations overload patient resources, a magnified stress response may be elicited. Social support was identified as a crucial prerequisite for healthy adjustment to TBI, which is often lacking for many TBI patients. Education and support for the family is a key strategy in helping patients maintain social support systems in the post-morbid period. An alarming amount of TBI patients have great difficulty returning to work, despite excellent track records pre-injury (Greenspan, Wrigley, Kresnow, Branch-Dorsey and Fine (1996).Motor deficits, personality and cognitive deficits, and social stigma may all affect a TBI patient’s ability to successfully re-enter the workforce.

Heilman and Valenstein (1993) defined quality of life as a four dimensional process which focused on emotional functioning, social role functioning, daily-living activities, and the ability to participate in enjoyable activities. The perception of what gives life quality is a unique and individualized one. What makes life worth living varies for each person.

McGlynn and Schacter (1989) attributed the use of questionnaires to assess self- awareness by comparing patient views with those expressed by families and clinicians as powerful, since some possible measure of the degree of unawareness was afforded. However, findings could be confounded if the families were utilizing denial as a coping mechanism. This problem can be overcome by including ratings expressed by the rehabilitation and clinical treatment practitioners. McGlynn and Schacter (1989) point out that questionnaires do leave room for improved diagnostic tools to evaluate the level of self-awareness in TBI patients. “It is difficult to determine on the basis of questionnaire responses what proportion of the discrepancy between patients and how much is caused by a neurologically based awareness disorder” (McGlynn & Schacter, 1989, p. 174).

Fleming, Strong and Ashton (1996) identified the Patient Competency Rating Scale (PCRS) as one of the most documented measures for evaluating self-awareness in TBI patients. Both the patient and a significant other rate the patient’s ability to perform functional tasks. Interpersonal skills, routine daily activities, functionability, and emotional status were rated. Godfrey, Partridge and Knight (1993) developed the Head Injury Behavior Scale (HIBS), a collection of twenty behavioral items rated by both patients and a significant other. Problems related to functioning in each of these items, and the degree of distress elicited during these activities were rated. Scores from both sets of subjects were compared for accuracy of the patients’ level of self-awareness of their condition. Often, the more severe the brain injury, the lower the accuracy of self-awareness. The Brain Injury Rehabilitation Scale (BIRS) has also been used to compare progress reported by the TBI patient, a significant other, and the attendent clinical practitioners (Farmer & Frank, 1988; Brooks, 1984). Fleming et al, (1996) listed a number of tests used to evaluate neuropsychological functioning, including the Change Assessment Questionnaire, adapted by Lam, McMahon and Priddy (1988) to test TBI patients. The measure tests three stages of change related to self-awareness: pre-contemplation, contemplation, and action. Anosognosia is most evident in the pre-contemplation stage, when people entering into TBI treatment do not think they have a problem or deficit, or do not want to change. Patients who remained too long in this pre-contemplation stage, fared the worst from standard TBI treatment. Mintz, Van Horn and Levine (1994) and Fleming et al, (1996) used structured interviews to elicit information from patients, families, and determine the patient’s level of self-understanding and interpersonal skills. The Self-Awareness of Deficits Interview (SADI) designed by Levine, Van Horn & Curtis (1993) an interviewer-scored structured interview, elicited both quantitative and qualitative data on the TBI patient’s self- awareness level.

Sherer, Bergloff, Boake, High, and Levin (1997) used a scale called the Awareness Questionnaire to collect data about TBI patients’ and their families’ perceptions of the self- awareness evident in the patients. The scale was designed to be adaptive to data collection done by patient self-report, significant others’ reports, clinician assessment, and results accumulated form neurpsychological tests. These authors found that the level of self-awareness deteriorated with the severity of the brain injury. They suggested that this fact suggests that impaired self- awareness has a neurological basis, and is not psychological denial. Sherer et al, concluded that further research was needed with this scale, as well as others, to investigate the test-retest reliability of patient and family report forms, as well as the clinician form.

Anderson, Bush and Berry (1984a; 1984b) used the Quality of Well-Being Scale (QWB) which assessed quality of life components of self-care, mobility, institutionalization, social activities, and symptoms or problems. The QWB differentiates between the current quality of life and the expected future well-being, as well as the quality inherent during the recovery period that extends between the present and the future well-being states. Qualitative studies, using techniques such as ethnographic study, descriptive case studies, nominal group techniques, and dialogue are particularly useful for the assessment of deficit self-awareness. (Fleming et al, 1996). Self-actualization theories are based on ancient Greek ethical perfectionist theories related to quality of life. As well, another Greek theory, Utilitarianism has long been used as a quality of life standard (DeHaan, Aaronson & Limburg, 1993). Judiasm and Christian influences also provide an alternate perspective of the quality of life. A sanctity of life ethic was first rooted in deontologic theory (Anderson, Bush, James, & Berry, 1984). This ethic supports that life is an absolute to be preserved at all costs, yet also suggests that only the fittest have the right to life and health care.

Outcome Prediction in Traumatic Brain Injury Treatment, Rehabilitation, and Recovery

With the advent of managed care systems for the care of disabled patients, including TBI patients, a prediction of outcome at the early stages of treatment is needed and can help plan for resource allocation (Olver, 1995). Outcome assessment is important for TBI patients, since it helps to plan an individualized approach for rehabilitation, and helps the patient and family make realistic decisions about school, work, living arrangements, and other aspects of their personal lives. Bowman (1996) questioned the validity of using biomedical, demographic, cognitive, and emotional characteristics in predicting outcomes for TBI patients. “Employment functioning and general psychosocial activities represent the most fundamental real-world outcome criteria in individuals who are physically capable of work, although other aspects of performance have been studied (Bowman, 1996, p. 383). Ponsford, Olver, Curran and Ng (1995) summarized that returning to work successfully was a strong outcome predictor for TBI patients. These authors studied 106 TBI patients to isolate predictors of employment outcome in the early stages of rehabilitation. Predictors of demographic factors (such as age), injury severity, and degree of disability on admission to rehabilitation were significant in this study.

Olver, Ponsford and Curran (1995; 1996) also supported the need for intermittent lifelong intervention following TBI. A high incidence of continuing cognitive, behavioral, and emotional changes were apparent in TBI patients followed up at two years and five years post- trauma. The measurement of outcome for TBI is linked to a need to demonstrate that rehabilitative intervention is cost-effective (Olver, 1995). Effective intervention implies that the TBI patients’ outcome will be better than if they had only experienced the natural recovery process, without intervention. Not only functional outcomes, but quality of life, psychosocial and behavioral adjustment, and life satisfaction must be included in outcome prediction. Olver observed that reports of loneliness and depression increase over time for many chronic TBI patients.

Hannay, Ezrachi, Contant and Levin (1996) reported results of studies done by the Outcome Measures Subcommittee of the National Institute of Health which provided a framework for assessment of TBI patients in the early stages of recovery through the rehabilitation process. Measures of orientation, posttraumatic amnesia, cognitive, motor and neurobehavioral impairment, and of disability and handicap were outlined by the subcommittee. A large neuropsychological battery of tests were used to test each subject’s functional status and measurements.

Fleming, Strong, and Ashton (1996) correlated a lack of self-awareness as cause for diminished motivation and resistance to treatment in TBI patients. Despite rehabilitation efforts to improve awareness of deficits in patients using strategies such as education about the consequences of TBI; feedback given related to videotaped patient behavior; directing patients to list their unique problems and concerns for sharing with other group members; and using consistent reinforcement of any behaviors that suggested that self-awareness was redeveloping (McGlynn & Schacter, 1989). Prigatano and Fordyce (1986) hypothesized that patients who did respond to awareness training were likely exhibiting defensive denial, whereas patients who showed little improvement in awareness from treatment, could have an organically based awareness disturbance. Only about half of the patients studied exhibited heightened self- awareness of deficits after training.

Prigatano (1989) hypothesized that TBI patients needed symbols, concepts, and analogies to help to adapt to the experience of brain injury, and to guide them in coping with issues and changes inherent in TBI rehabilitation. Prigatano proposed that the symbols of work, love, and play were useful to help TBI patients adapt to their unique level functioning, in the post-morbid recovery period. Symbols produce an array of cognitive and affective responses in people. Prigatano illustrated the power of symbols using the symbol of “hero” as an example. A hero’s actions creates both cognitive and affective reactions in people. “It stirs something in the individual’s spirit because it touches on a core need of all human beings - the need to face adversity in life, to overcome that adversity, and then return to one’s basic roots (or psychological identity)” (Prigatano, 1989, p. 425).

Prigatano explained that the rehabilitation process for TBI patients should include the use of symbols to stimulate cognitive and affective experiences that help them to move through the transition from being a “normal” person with a head injury to a person who demonstrates some semblance of normality in the presence of brain damage. Work and love have long been accepted as indicators of “normalcy” in humans. To have the capacity to demonstrate cooperation, efficiency, effectiveness, and reliability - all inherent components of “work”, as well as the core tenets of “love” - commitment, intimacy, and passion, symbolized some degree of normalcy. “Play” in this context, refered to the ability to attend to the internal fantasy world of the self. Indulging playful thoughts, actions, and feelings, put a person in touch with their unique inner world of being. “It is precisely in play, therefore, that we are able to reach deeper levels of individuality, as Jung defined it, which is necessary for adult psychological development” (Prigatano, 1989, p. 427).

In Prigatano’s work, these three life components were symbolized as: love as a triangle, work as a square, and play as a circle. Further, he postulated that the symbol of human individuality was a circle, as well. He asserted that it was crucial for TBI patients to develop a sense of individuality to experience meaningful recovery. Play could help TBI patients to experience a sense of their “old” identity, the richness of their own inner being. Prigatano’s goal was to help these people to achieve a renewed sense of identity that incorporated the changes that accompanied the brain injury with their previous sense of self. Work and love gave a sense of meaning and purpose to life. Play put them in touch with the entity they essentially were, brain injured or not. Symbolic experiences in therapy, helped TBI patients to reassemble the fragmented components of their self-awareness and identity, and to develop a sense of direction and internal sense of wholeness in a realistic way.

Whitlock and Hamilton (1995) also emphasized the importance of identifying outcomes for even the most severely injured TBI patients. Katz and Alexander (1994) explained that rehabilitative services are expected to provide realistic prognoses about outcome and cost/time projections of the projected services needed to treat TBI patients. Ip, Dornan and Schentag (1995) elaborated that prediction of outcome for brain-injured patients facilitated effective rehabilitation program planning which ultimately improved the TBI patient’s quality of life. Traditional outcome planning has depended on tools such as the Glasgow Outcome Scale which focuses primarily on physical outcome and functioning. With the revision of the ICIDH (WHO, 1997), more holistic and integrated outcomes are encouraged, including psychosocial , emotional, and self-actualizing outcomes for true recovery to be targeted.

Montgomery (1995) described TBI patients as demonstrating an inconsistency in functioning over time and circumstances. Thus, outcome prediction must take into account a multitude of factors, besides the actual brain damage and neuropsychological symptoms. “A challenge for the rehabilitation therapist is to help clients, and their families, to discover and better manage whatever factors can be observed to compromise productive work at times, complicate social relationships, or render the person less able to cope with stress. The conduct and benefits of neuropsychological counseling will vary, of course, depending upon a client’s insights, retained neuropsychological abilities and personality features” (Montgomery, 1995, p. 467).


It is important to distinguish between defensive or motivated denial in patients and neurologically based unawareness (McGlynn & Schacter, 1989). It is probable that defensive denial does play a large part in some cases of agnosognosia. It can be difficult to recognize which is operating in a specific patient’s case. Patients with neurogenic awareness may exhibit neuropsychological symptoms not evident in patients demonstrating defensive denial. More studies are needed to discover clear distinctions of these two phenomena of awareness. When agnosognosia is neuroanatomical, the area of brain damage may be instrumental in pinpointing the deficits in awareness. Several studies linked right-lobe damage with increased incidence of anosognosia. More research is needed to clearly understand the etiology of this link.

Godfrey, Knight and Partridge (1996) postulated that most cases of agnosognosia or poor insight stem from a combination of biological and psychological causes. This lack of self- awareness could even be seen to be a positive emotional adjustment, allowing a patient to feel optimistic about the prognosis of the TBI. These authors also theorized that depression was inevitable in TBI adjustment. For some patients, the depression set in soon after the injury, for others, long periods of time passed before depression took hold.

Research is also needed to discover effective ways to retrain awareness of self and deficits in TBI patients(McGlynn & Schacter, 1989). Studies in awareness training need to distinguish between psychogenic and neurogenic causes of denial and unawareness, since treatments may need to be different for each. Research related to metacognition and self- monitoring may be useful for this purpose (Kihlstrom and Tobias, 1991). Further research is also needed to discover if anosognosics do have implicit knowledge of their deficits that they deny explicitly (McGlynn & Schacter, 1989). Is this implicit knowledge prevented in some way from entering conscious awareness?


(Author’s Note: Not included for brevity)

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