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Journal Title: The journal of head trauma rehabilitation. Volume:

1998 Pages: 62-78

Article Title: Awareness intervention: needs it? Article Author: Sohlberg, M M co o 0'>

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Location: Knight periodicals ISSN: 0885-9701

13 Issue: 5

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Call #: RC387.5 .J68

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Awareness Intervention: Who Needs It? It is widely accepted that awareness deficits present challenges to recovery and should be addressed as part of rehabilitation programming. Response to awareness intervention is commonly inferred from measurements that rely on reports by subjects and significant others. This article describes the findings from a pilot study that examined the relationship among a variety of awareness indicators in three individuals with brain damage over a 9-month period. Results suggest a dissociation between behavioral and perceptual indices of awareness. Changes in behavioral indicators of awareness selected by caregivers were not related to changes in self- or caregiver ratings. The clinical and research implications of the findings are discussed. Key words: awareness deficit, behavior modification, brain injury, intervention

McKay Moore Sohlberg, PhD Assistant Professor Communication Disorders and Sciences University of Oregon Eugene, Oregon Catherine A. Mateer, PhD Professor Department of Psychology University of Victoria Victoria, British Columbia, Canada Louise Penkman, MSc Department of Psychology University of Victoria Victoria. British Columbia, Canada Ann Glang, PhD Associate Research Professor Teaching Research Division Western Oregon University Monmouth. Oregon Bonnie Todis, PhD Associate Research Professor Teaching Research Division Western Oregon University Monmouth, Oregon Address correspondence to M.M.Sob/berg, Communication Disorders and Sciences, 5270 University of Oregon, Eugene, OR 97403-5270.

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WARENESShas been identified as a rnajor determinant of successful rehabilitation after acquired brain injury.' In response, the rehabilitation literature has focused on Increasing our knowledge of this neuropsychological process and on investigating methods to assess and manage deficits in awareness. A review of the awareness literature suggests several points of consensus. First, awareness deficits are prevalent after brain damage, particularly when there is damage to frontally mediated systems."? Second, awareness deficits present rehabilitation obstacles. Patients who seem unaware of the nature, degree, or impact of their impairments may be resistant to or ambivalent about treatment and are often perceived as more difficult to work with than those who are eager to engage in rehabilitanon.s? However, despite increased recognition of the importance of awareness in rehabilitation, there is only a limited amount of infonnation regarding the effectiveness of awareness intervention strategles.s'? Measurement dilemmas present a logical explanation for the paucity of awareness in-

A

Preparation of this article was supported in part by grant #H086D50012 from the US Department of Education. ] Head Trauma Rehabill998;13(5):62-78 © 1998 Aspen Publishers,

Inc.

Awareness Intervention

tervention research. 11,12 The difficulty in measuring awareness in part stems from the fact that it cannot be measured directly but must be inferred. Awareness is an attribute of feeling or knowing that has psychological and behavioral correlates. Attempts to measure awareness have focused on identifying these correlates to develop valid, reliable methods to assess the nature and/or severity of an awareness deficit. 1,12 It may be, however, that clinicians and researchers have been too narrow in their focus. The identification of indicators of awareness may first require more knowledge about the implications of awareness deficits for the lives of those individuals affected by awareness deficits. This article begins with a review of the scant awareness intervention literature to Identify current methods for assessing aspects of awareness related to rehabilitation programming. This review includes an attempt to distinguish assumptions held by researchers and clinicians who employ these current indicators of awareness. The results of an awareness measurement pilot study are then presented; these results raise questions regarding current practices of measurement and intervention. HOW DO INTERVENTION STUDIES MEASURE CHANGES IN AWARENESS? The literature has advanced a number of theoretical frameworks for conceptualizing awareness that have implications for rehabilitation.,·I3-" (See the article by Giacino and Cicerone elsewhere in this issue for a review.) However, there are very few data-based reports describing the actual efficacy of various methods used to manage deficits in awareness. Currently, the awareness intervention literature consists of a smali body of unrelated reports describing individual management techntques.s-w Researchers have relied on subjects' verbal reportsv'" or on the interpre-

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ration of certain aspects of their behavior filtered through the perceptions of observers'. 16 as sources from which to infer a change in awareness.

Interventions that measure awareness via subject self-report The literature is mixed with regard to the reliability of subject self-reports as indicators of levei of awareness. Many reports note that subjects may provide inconsistent or biased information, usually in the direction of minimizing.!" Recent reports, however, suggest that questionnaire data may be a more reliable indicator of awareness than was previously believed.' Regardless, subject self-report Is a commonly employed clinical and research method to ascertain the nature and level of an awareness deficit. Langer and Padronc'< suggested having subjects complete and reflect on their performance of familiar and quantifiable tasks as a method to increase awareness of their deficits. They encouraged the provision of concrete feedback on their performance. improvements in awareness were inferred when subjects verbaliy acknowledged deficit performance and discussed the implications of these deficits. Deluca' offered a threetiered program to increase awareness after brain injury. He also described improvement in a subject's awareness based on a subject's verbal recognition of deficits. Awareness re~ portedly improved when "the patient was able to verbalize his understanding and frustration with his other cognitive problems .... " Sohlberg et al" compiled a number of published and unpublished methods for managing awareness deficits into a clinical manual. They divided awareness training techniques into educational and experiential approaches. Both approaches target increasing an individual's knowledge, understanding, and insight about existing deficits and their probable effects. Practitioners who use an educational

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approach directly teach the patient relevant infonnation, while practitioners who use an experiential approach structure opportunities to allow the individual to experience preserved and impaired abilities and to draw conclusions from these experiences. Response to both types of awareness training exercises was measured predominantly via subject report. Of note, the authors offered no empirical validation of the awareness training exercises. Schacter, Glisky, and McGlynn (cited in McGlynn and Schacter") described an attempt to increase awareness of deficits in a patient with severe amnesia. They administered lists of Information for the patient to remember and asked him to predict his own recall performance. They provided the patient with extensive feedback and discussion concerning the noted discrepancies between his predictions and his actual performance. His predictions eventually became more realistic,

and his responses on questionnaires were noted to reflect increased awareness of his memory problems. The authors concluded that an amnesic patient may be able to de-

velop awareness of memory functioning when provided with sufficient repetition. However, they noted that the patient did not apply this new knowledge to novel situations, suggesting that although the training may have worked for the specific task, generalization and functional impact were limited. In a similar vein, Rebmann and Hannon'? reported on an intervention for reducing unawareness of memory deficits in three adults with brain damage. They provided social and monetary

reinforcement

for increased accu-

racy in their predicted test scores on the Brief Multiparametric Memory Test and noted that all three subjects became more accurate in their predictions. The authors concluded that this type of behavioral treatment may be beneficial in the treatment of awareness deficits. Implications of the increased ability to accurately predict performance on

1998

a memory task for day-to-day functioning were not discussed. In summary, a number of descriptions of awareness intervention techniques utilize changes in subjects' reports of their own functioning as an indicator of improved awareness. When subjects began to verbalize their difficulties, describe impainnents, or more accurately predict their own performance, investigators concluded that awareness had improved.

Interventions that measure awareness via other interpretations Similar to the self-report data, the literature offers variable descriptions of the reliability in using reports by clinicians and family members to assess awareness. I Several reports in the literature suggest exercising caution when using family or staff reports as an indicator of awareness.w-" Families do not all respond in the same way and may have specific perceptual biases depending on characteristics of the individual family system, the patients' residual impairments, and the duration of time post injury.21.22Clinicians may rely on stereotypical views of patient performance that are influenced by differing sociodemographic factors between themselves and subjects.> Despite these shortcomings, several researchers have utilized patient-relative/elinician comparison methods with questionnaires to ascertain the results of awareness intervention.v-s Using the Patient Competency Rating Scale (PCRS), Fordyce and Roueche? subdivided subjects who were participating in a comprehensive rehabilitation program into three groups. Group 1 had similar ratings on the PCRS as their family members and staff before and after treatment, suggesting little impairment in awareness. Group 2 showed a pretreatment disparity on the PCRS between selfand other ratings, but better alignment of ratings at the end of treatment. Subjects in Group

Awareness Intervention

3 also demonstrated an initial disparity, but this increased rather than decreased by the end of treatment. Subjects in Group 1 demonstrated reduced emotional distress, whereas subjects in both Group 2 and Group 3 demonstrated an increase in distress over the course of treatment. Using the patient-relative comparison method as the awareness assessment, the authors suggested that for subjects in Group 1, awareness training may have facilitated their appreciation of competencies. For Group 2, increased awareness appeared to come at the cost of increased emotional distress, and for Group 3, the intervention appeared to increase emotional distress, perhaps in the form of a defensive reaction. Interestingly, from a functional perspective, the authors found no difference in vocational outcome between the three groups. Godfrey and colleagues" also used the patient-relative comparison as an assessment of response to awareness intervention. Similar to Fordyce and Roueche,? they concluded that onset of emotional distress may coincide with increased awareness of deficits. Another method that employs significant other perceptions to assess awareness is the comparison of others' behavioral observations with subject self-report. Clinicians or relatives observe and interpret patient performance and compare their interpretations to patients' self-reports. Allen and Ruffl' compared self-ratings of ability on questionnaires with clinician report of abilities gathered through interpretation of performance on neuropsychological tests. Problems were noted with using neuropsychological tests as a measure of everyday life. This method was not used, however, in conjunction with an intervention regimen. In summary, the majority of published intervention techniques measure awareness in terms of the subject's explicit knowledge and report of information relevant to their cognitive or behavioral difficulties."'" This is often

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inferred by discrepancies between self-reports and other reports. The current authors' clinical experience suggests that, in practice, many clinicians take a more behavioral perspective in evaluating a subject's level of awareness. Many therapists infer level of awareness from the degree to which an individual utilizes compensatory strategies to accommodate deficits and cooperates with therapy regimens. Several important assumptions are inherent in adopting either ofthese approaches as the standard from which to measure awareness. Current

assumptions

As reviewed, the evolution of clinical practices to assess and manage awareness deficits in subjects with brain injury has resulted in use of the following sources from which to infer possible changes in awareness functioning: • a change in the verbal report of the subject a change in some measure of behavior that is taken to imply or require an increased level of awareness • a change in the perception of others about a person's awareness a change in the perception of others about some behavior taken to imply or require an increased level of awareness These practices rely on several important assumptions. First, the use of self-report and other perceptual data as a measurement of awareness assumes that perceptions are amenable to change if there is an underlying improvement in awareness. Second, the use of behavioral observation as an indicator of a change in awareness assumes that it is possible to identify behaviors that are dependent on intact awareness. Both of these assumptions need to be examined more systematically before researchers and clinicians endorse currently employed awareness indicators as ecologically valid methods for evaluating changes in awareness.

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We were interested in learning more about the relationship between different indicators of awareness. Presumably, a change in one of the commonly used criteria to assess changes in awareness as a result of intervention (eg, reduced discrepancy between self- and clinician report of function) would be mirrored in one or more, if not all, of the other criteria (eg, a change in specific behavior indicating improved awareness). We were also interested in exploring awareness deficits from the perspective of those most affected by itpersons with brain injury and their caregivers-as a forum for evaluating the current direction of awareness intervention research. These interests led to the implementation of a pilot study. PILOT STUDY The pilot study examined several different measures of awareness concurrently and longitudinally. The awareness measures fell into one of three categories: 1. performance of a behavior or skill indicating preserved awareness 2. a verbal report measure completed by the person with brain injury regarding his or her perceptions or knowledge about a variety of competencies 3. social validity measures of the caregivers' perceptions regarding the individuals' levels of awareness. These measures were administered concurrently to three subjects with brain injury and their caregivers on five separate occasions over a 9-month period. Methods Design The study took serial measurements of awareness using five different measures over a 9-month period.

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Subjects Subjects were selected from residents living in a low-income, assisted-living apartment complex for persons with moderate to severe brain injury. Residents lived in individual apartments and received monitoring as needed for activities such as grocery shopping, administration of medication, and money management. This support was provided by paraprofessionals (ie, caregivers) with little or no formal training in brain injury rehabilitation. Examples of optional support groups available to residents in the complex included a social skills development group, an addiction support group, and a women's group. Formal rehabilitation was neither available nor provided to any of the subjects. The first author attended a weekly staff meeting in which all the caregivers who worked at the complex were present. She asked them to select four residents whom they judged as having awareness problems that prevented them from making progress in living more independently. The staff easily reached consensus on selecting the four subjects. Information is presented on only three subjects, however, as one subject was evicted from the assisted-living complex halfway through the study owing to violent behavior. All subjects were many years post injury and were not expected to move into a more independent situation in the future. Subject K. K was a 40-year-old man who had received a severe brain injury in an alcohol-related motor vehicle accident at age 19. He was comatose for several months afterward. He had stabilized over the 21 years following his accident but demonstrated residual physical and cognitive impairments. He had participated in a variety of day treatment and vocational training programs. His performance on neuropsychological and vocational assessments was very consistent in indicating severe frontal lobe dysfunction.

Awareness Intervention

Reports suggested K had a normal range of intelligence but deficits in short-term memory and problems with inhibitory control and social insight. Problems with awareness and insight into his cognitive and behavioral problems caused difficulties, such as being asked to leave vocational programs for kissing female coworkers. Prior to his accident, K had completed high school. Although no school records were available, K denied any history of learning or emotional problems. Subject R. R was a 23-year-old man who was injured in a combined near-drowning and fall while swinging on a rope swing over a river. He experienced a traumatic brain injury in addition to anoxic damage. Imaging studies revealed right brain contusion and right-sided intraventricular hemorrhage. He participated in an extensive inpatient rehabilitation program and subsequently lived in a nursing home before moving to the assisted-living apartment complex. A neuropsychological evaluation performed 2 years post injury revealed significant impairments in speed of processing, executive functions, reasoning, insight, and motor functioning. Prior to his accident, R had adequate academic performance, but there was a history of behavior problems in junior high school. At the time of the research project he was 7 years post injury. Subject S. S was a 40-year-old man who had sustained a severe brain injury in a motor yew hide accident at age 21. Self-report indicated a coma duration of greater than 2 months. A neuropsychological evaluation completed 12 years after injury revealed severe impairments in mobility; speech; and all areas of cognition, including memory, reasoning, and executive functions. The report suggested that S sustained diffuse cortical involvement, with the left hemisphere being more impaired.

Measures Five awareness instruments were administered. The first two were measures of care-

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giver perceptions of the subjects' awareness levels; the third and fourth measures assessed the subjects' perceptions of their abilities and disabilities; and the fifth measure involved tracking a behavior agreed by caregivers to be

indicative of awareness. Caregiver rating of subject awareness The caregivers were asked to meet and reach a group consensus on a global rating of each subject's level of awareness. The scale consisted of a five-point Likert scale in which a rating of I corresponded to the subject demonstrating an acceptable level of awareness of his limitations and a rating of 5 corresponded to the subject demonstrating no awareness or almost no awareness of limitations (see box, "Rating Scale Given to Caregivers for Judging Subjects' Levels of Awareness"). Caregiver rating of subject abilities using the Self/Other Rating Form In the aforementioned meeting, the caregivers were also asked to reach consensus and fill out the Self/Other Rating Form for each of the subjects. This form asks the staff to give a rating of 1 to 5 for 24 different com-

Rating Scale Given to Caregivers for Judging Subjects' Levels of

Awareness

2

3 4 5

Shows an acceptable level of awareness of his/her strengths and disabilities Shows fairly good awareness, but limitations in awareness of disability sometimes cause problems Is about halfway there in reaching an acceptable level of awareness Has a little awareness of disabilities, but it is very limited Shows no awareness or almost no awareness of disabilities

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petency areas, with 1 corresponding to "Performs Above Average," and 5 corresponding to "A Major Problem Area." The 24 competencies are clustered in five different areas: cognition, social/emotional issues, daily living skills, physical abilities, and leisure time management. This form was an adaptation of a clinical protocol used at a brain injury rehabilitation center (Corey M. Self/Other Rating. Unpublished scale. 1984). A complete version of the form is given in the Appendix.

Subject rating using Self/Other Rating Form This measure used the same Self/Other Rating Form described previously. However, this time subjects filled out the questionnaire. The questionnaire was always completed via interview to make sure that the subjects understood the questions and the rating system. Photograph

rating

A portion of the "Picture This!" assessment by Sohiberg and Rawlings-Boyd" was utilized. This package has 80 photographs depicting different cognitive failures across a variety of home andcommuniry settings (eg, missing a bus, forgetting the wet laundry in the washer, and forgetting peoples' names). For each subject, the caregivers selected pictures of cognitive failures that represented problems that subjects would either be very likely or very unlikely to experience. Any photographs that all six caregivers did not easily place into one of those two categories were not utilized. From the selected photographs, the examiner chose six photographs for each subject depicting three problems that would be very likely to occur for him and three problems that would be very unlikely to occur. The goal was to have a nonverbal, less personal way of assessing subjects' perceptions of their competencies as an alternative to the traditional verbal questionnaire. Each subject was then showed his group of photographs and was

1998

asked to say whether each of the photographs represented a problem that he (1) would be very likely to experience, (2) might experience, or (3) would be very unlikely to experience. Behavioral

measure

A different behavioral measure that caregivers judged to be indicative of level of awareness was identified for each subject. At the initial meeting, when caregivers were asked to identify subjects with awareness difficulties, they were also asked to identify specific behaviors they felt indicated problems with awareness. They were further advised to choose behaviors using the guide of "If this behavior increased/decreased, it would suggest a definite improvement in awareness." The researcher provided no input into the identification of the behaviors that were selected, and thus they completely represented the perceptions of the caregivers. The caregivers all identified the same behaviors for each of the subjects. At the same time, caregivers were also asked to develop a tracking sheet to monitor each of the behaviors and to decide who would fill out the form and when. A plan was further developed in which an observer unknown to the subject could come and monitor the behaviors to supply reliability measures. The following behaviors were identified for monitoring: Subject K: Increased independence in grocery shopping, as measured by a rating scale, with a compilation score derived from adding levels of cueing needed for three behaviors: arriving on time for the shopping bus, bringing a completed grocery list, and bringing money or a checkbook. The rating form was filled out by the caregiver assigned to help with grocery shopping that week. Subject R: Decrease in interrupting behavior, as measured by a count of the number of interruptions during an hour-

AwarenessIntervention

o

long weekly life skills meeting, to be tallied by a caregiver observing but not leading the group. Subject S: Use of a compensatory system checklist at a janitorial work placement, to be evaluated by the job coach on standard protocols supplied by the workplace. S was scored on the percentage of cleaning tasks that he performed independently. Completion of these cleaning tasks required him to use his checklist.

covary with changes in behaviors that the caregivers judged to be indicators of impaired

awareness. To explore this question, an attempt was made to improve two of the behaviors and then see whether caregiver per-

ceptions of awareness covarted with any behavioral improvements.

ness probes, was implemented for K and S. This program followed a set of prescribed procedures for selecting and teaching the use of compensatory systems.> Basically. caregivers were coached in how to empower subjects and involve them in the identillcation and development of external cueing systems and in how to use task analysis and systematic cueing in their training methods. A calendar system was implemented with K, and a checklist system was implemented with S. No intervention was planned for R.

Each of the first four measures were administered over the course of a week by one of the researchers. Data collection involved attending the weekly caregiver staff meeting held during the measurement week and first obtaining the caregiver data. Appointments were then scheduled with each of the subjects, and they were interviewed sometime during that week. Five measurement periods were conducted over a 9-month period. The behavioral measures were taken by the caregivers as described on the individually devised tracking sheets. A research assistant observed the behavior and kept reliability data for at least one third of the measurements. The study sought to explore whether caregiver perceptions of level of awareness would

indicators

for measures

Results

Caregiver rating of subject awareness The caregiver awareness ratings for each of the subjects are presented in Tables 1 through 3. As shown, the scores for each individual subject never varied by more than one rating interval. When giving a global awareness rating, caregivers were fairly consistent

1 through

(out of three total photographs)

4 for Subject K

Week 2

Month 2

Month 5

Month 9

5

5

4

4

5

88

83

80

83

86

57

62

58

54

59

2

2

2

2

3

WeekI Measure 1: Caregiver rating of level of awareness (scale, 1-5) Measure 2: Total points on Self/Other Rating Form as judged by caregivers Measure 3: Total points on Self/Other Rating Form as judged by K Measure 4: Number of photographs for which subject disagreed with caregiver

A specific inter-

vention program, separate from the aware-

Data collection procedures

Table 1. Awareness

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1998

Table 2. Awareness indicators for measures I through 4 for Subject R WeekI

Week 2

Month 2

MonthS

Month 9

4

3

4

3

4

73

71

65

67

79

71

64

68

64

66

2

2

2

2

3

Measure 1: Caregiver rating of level of awareness (scale, 1-5) Measure 2: Total points on Self/Other Rating Form as judged by caregivers Measure 3: Total points on Self/Other

Rating FOnTI as judged by R Measure 4: Number of photographs for which subject disagreed with caregiver (out of three total photographs)

Table 3. Awareness indicators for measures I through 4 for Subject S WeekI Measure 1: Caregiver rating of level of awareness (scale, 1-5) Measure 2: Total points on Self/Other Rating Form as judged by caregivers Measure 3: Total points on Self/Other Rating Form as judged by S Measure 4: Number of photographs for which subject disagreed with caregiver (out of three total photographs)

Week 2

Month 2

MonthS

Month 9

3

3

3

3

3

104

108

110

123

104

71

75

66

63

81

3

3

1

2

2

in their judgment of each subject's level of awareness over the course of 9 months.

Caregiver rating of subject abiUties The total number of points on the Self! Other Rating Form generated by the caregivers for each subject is presented in Tables I through 3. Because the instrument had not been subjected to validity or reliability studies, finer analyses by category are not presented. There were 24 items, each of which was given a competency score ranging from 1 to 5, with a higher score suggesting a "bigger problem." The variability from highest to lowest score for the three subjects was narrow, suggesting a fairly consistent rating.

Subject rating The total number of points on the Self! Other Rating Form generated by each subject via interview is presented in Tables I through 3. It was the same protocol described above consisting of 24 abilities that clients rated from I to 5, with higher ratings indicating more disability. The variability between scores was again narrow, suggesting a fairly consistent rating over the 9 months. As has been commonly reported for individuals with acquired brain injury (AB!), two of the subjects CKand S) rated themselves as having greater levels of competencies than did the caregivers. R, however, rated his levels of

Awareness Intervention

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functioning similarly to caregivers' ratings. The discrepancies between self- and caregiver ratings did not reveal any pattern over time. The greatest variability in discrepancy scores was for 5, for whom differences between raters were 33, 33, 18, GO,and 23 over the five measurement periods.

Photograph rating Tables I through 3 also display the number of photographs that each subject rated as depicting an unlikely problem but that caregivers indicated depicted a likely problem that the individual would encounter in his daily life. For each subject, there were three photographs the caregivers had indicated that represented problems the subject would likely encounter and three photographs caregivers indicated that the subject would be unlikely to encounter. There were no instances in which the subjects declared that a photograph represented a likely problem that the staff had not indicated would be a problem. Hence, the discrepancy was always in the direction of subjects disagreeing with caregivers as to whether they would be likely to experience the type of cognitive failure displayed in the photograph. The numbers were small owing to the strict criteria of using only those photographs that all caregivers had rated as very likely or very unlikely to occur for the subject; hence, no statistical analysis of variabiliry is possible. Overall, there was a high degree of disagreement between the caregivers and subjects about which problems would be likely to occur in the lives of the subjects, with subjects consistently minintizing potential problems. There was no pattern of change over time in subjects' ratings.

Behavioral measures The behavioral data for each subject are as follows: K· Figure 1 shows an improvement over time in the compilation score reflecting

o-~~~~~~~~e~~~~~~~~~g~~~~ W~"

Fig 1. K's level of independence shopping.

during grocery

the level of prompting needed for K to complete his grocery shopping preparation activities. Data were collected two to three times per month depending on caregiver schedules. By the end of the 9 months, K had responded well to the intervention and was beginning to be independent in arriving at the bus on time, bringing a completed grocery list, and carrying needed money. Reliability measures on the ratings of grocery shopping were taken on five occasions. There was 100% interrater reliability between the ratings of the research observer and those of the caregiver. R: R also demonstrated significant improvement on his behavioral marker, although this was not directly treated as part of this study. Figure 2 shows that by month 5, his interrupting behavior was no longer an issue in group sessions. The caregivers then ceased taking data and reported verbally that interruptions were no longer an issue. Reliability measures were taken on 4 of the 13 groups. Interobserver reliability averaged 97%. This decrease coincided with a change in antidepressant medication and a change in group discussion topics that avoided sex and religion, which were triggers for R's interrupting behavior.

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S: The behavioral data for S are displayed in Figure 3. He showed little change in the percentage of cleaning tasks performed independently and did not reo spond to the intervention teaching him to use his checklist. Reliability measures were taken once a month. Agreement between the ratings of a research assistant and the job coach was 100%.

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o +--+-->-_>---'l'-_o 5

Discussion

__ ~ 6

Months

The study provided longitudinal data looking at awareness from several different perspectives for the purpose of observing whe-

Fig 3. Percentage independently.

of cleaning tasks S performed

ther there were consistent relationships between different measures of awareness that might be useful in the planning of future clinical research. Results suggested a dissociation between behavioral and perceptual indicators of awareness. If one defined awareness by the behavioral indicators, two of the subjects experienced substantial improvement in awareness. If one defined awareness by (I) a decrease in discrepancy between caregiver ratings and self-ratings of competency, (2) self-judgments about likely cognitive breakdowns depieted photographically, or (3) global ratings by a significant other, then none of

•

\\;

the three subjects' levels of awareness changed over time. The clinical and research implications of these findings are discussed in the following section.

CUnical and research impUcations Perhaps the most notable result was that perceptual and behavioral indices of awareness did not covary. K's data offer a clear example. A decrease in the discrepancy be-

tween the caregivers' and K's ratings on different competencies did not precede or coincide with behavioral improvements (ie, K's increased use of a compensatory calendar system to facilitate grocery shopping behaviors). K met a goal of increased independence in grocery shopping, yet there were no pre-

ceding or concurrent indicators of signifi-

•

cantly increased insight as measured by a lessening in discrepancy ratings over the 9 months. There was no increase in accuracy in identifying photographs depicting COgnitive breakdowns that would be likely to occur in

his life, and there was no increase in the

Fig 2. Number of interruptions by R during group session.

caregivers' judgments of his awareness level. This lack of relationship between the perceptual and behavioral data raises an interesting clinical question: Do subjects need to have

a prerequisite level of awareness to utilize

Awareness Intervention

compensatory strategies, as is the belief currently held in the literature?"',,'l Perhaps subjects can be trained to utilize compensatory systems more independently, even when they do not understand why or believe that they need them. It could be that for some subjects, the lack of insight or awareness will also prevent them from questioning or reflecting on whether they indeed need to use the system, which in turn will allow clinicians and caregivers to establish the necessary habits and procedures, Most therapies encourage clinicians to increase knowledge or insight into the nature of a problem." For some more severely impaired subjects, it may be more productive to tap into implicit learning and lay down the procedures for using a system without addressing the declarative knowledge for why the systems or strategies are important," It has been suggested that those patients who benefit from awareness training are expressing defensive denial and do not have neurologicaliy based deficits of awareness, 26 Further research identifying which subjects do and do not benefit from knowledge- or insight-based training is needed. R's data also provide an example of a dissociation between behavioral and perceptual data, Even when his interrupting behavior ceased, caregivers did not alter their perceptions of his awareness. The caregivers collectively chose behaviors they felt would indicate improved awareness; however, for both K and R, when those behaviors improved, there was no improvement in caregiver global ratings of awareness, The caregivers ali expressed satisfaction that both subjects demonstrated improvements, but they did not substantially alter their judgments of these subjects' levels of awareness. By acknowledging the behavioral improvements, the caregivers demonstrated they did not feel that awareness was necessary for learning to occur, It appeared that they did not link awareness with learning, but instead may

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have linked it with open admission of impairment, Hence, giving caregivers methods by which to see themselves as effective in changing behavior even when "awareness" does not change may be therapeutic. We do not know whether the caregivers did not appreciate an improvement in awareness or whether behaviors improved in the absence of changes in the subjects' understanding and insights into their abilities. The caregivers may be correct in assuming that awareness did not change even when an "awareness behavior" improved. The assumption by caregivers that certain behaviors are causaliy related to awareness may be flawed. Alternatively, subjects' behaviors could have changed in the absence of any true change in their awareness level. The literature supports the notion of learning without awareness." Both explanations encourage addressing caregiver attitudes and beliefs as apart of an awareness intervention program. Another explanation for the findings may be that the rating scale was too global to capture and reflect changes in one area of functioning or that consensus agreements on a flve-point scale did not allow sufficient variance in scores to reflect a change in caretaker judgments. One notable pattern in the data was the consistency in the self- and other perceptions about subjects' competencies over the 9 months. Visual inspection of the perceptual ratings by both the caregivers and the subjects revealed consistent ratings over time. This may be another indicator that perceptual ratings are resistant to change. Another possible outcome might have been inconsistent scores, reflecting the "roller coaster" of suecess and challenges so often experienced in the lives of persons with brain injury. The stability in the perceptual data lends some support to the notion that the awareness deficit demonstrated by the subjects in our sample is neurologically based, as opposed to being more emotionally or motivationally based.

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The chronic nature of the deficits and the lengthy time post injury may have been primarily responsible for the consistency in ratings. The three cases reviewed in this report suggested that caregivers may only perceive improvements in awareness if the subject "owns up" to his or her disabilities and explicitly views them similarly to the caregiver. When planning an awareness program, it may be important for the clinician to first establish whether decreased knowledge and insight about one's abilities and disabilities present a barrier to functional goals or are primarily a psychosocial issue from the caregiver's perspective. It could be dangerous to assume that lack of awareness will necessarily prevent a subject from meeting treatment goals. In summary, the clinical "take-home" message of this pilot investigation is that awareness interventions need to begin by establishing the most helpful element to modify in the lives of the person with awareness deficits and those who interact with the person. Explicit discussion about treatment goals and caregiver/self-perceptions may be necessary to choose appropriate treatment goals. For some individuals, an appropriate treatment goal may be to facilitate a specific behavioral change with or without addressing lack of knowledge or insight about disabilities. For other individuals, the appropriate approach to treatment may be to work with caregivers to help them understand their own perceptions, beliefs, and expectations. For example, it may be important to convey to caregivers that behavior can improve without global changes in awareness.

Limitationsof tbe study Given the informal, preliminary nature of the project, the pilot investigation had several obvious shortcomings. Most notable among these were the unknown psychometric properties of the Self/Other Rating Form, which has not been subjected to validity or reliabil-

1998

ity studies. The instrument was chosen hecause the researchers had extensive experience using it clinically and believed its familiarity would be helpful when attempting to compare different awareness indices. Also of concern was the generalizability of the findings, given the small number of subjects, all with acquired brain injury living in a similar environment. Responses may have been biased by the exclusive use of paraprofessionals. However, this setting was chosen because the use of paraprofessionals is very common with this population. Given the interesting findings from this pilot study, future research that replicates the results of this investigation with a larger sample, using validated measures, is warranted.

FURTIlER RESEARCH IMPUCATIONS A few researchers have pressed for the use of qualitative research in studying awareness. This line of work suggests that the most effective method for gaining insight into the phenomenon of awareness deficits is to study it from the perspective of those closest to or most affected by the problem as opposed to relying on impressions by outsiders or researchers.V' The results of the pilot study encourage future research efforts that focus on identifying the effects of awareness deficits on the lives of persons with brain injury and their communities to encourage designing ecologically valid treatment efficacy studies. A recent qualitative investigation by McColl et al" provides an excellent model for a qualitative study. This study revealed the primary indicators of successful community integration based on the perspectives of people with brain injuries. A similar study that develops the indicators of improved awareness based on the perspectives of caregivers would have great clinical utility. The current pilot study suggested that one component in caregivers' definition of aware-

Awareness Intervention

ness is the subject's open acknowledgment of limitations that match the perceptions of the caregivers. A qualitative study could test this assumption and further explore and develop caregiver definitions of awareness. Another line of inquiry would be to expand the awareness research with further investigation of the relationship between motivation and rehabilitation progress. Although

successful outcomes and level of awareness may be correlated,' Herbert and Powell" found that optimism and motivation were better predictors of performance outcome than level of insight. Subjects in their study who were optimistic and motivated did better than subjects who were less optimistic. It may be that awareness is targeted when it would be more effective to address motivational factors. Research specifying which techniques are helpful in facilitating motivation could be fruitful. Bergquist and Jacket, 10 for example, argue for the active involvement of subjects with brain injury in setting goals for their rehabilitation program.

75

SUMMARY The present study encouraged further exploration of the relationship between caregiver perceptions and behavioral indicators of awareness in persons with brain injury. It further encouraged an evaluation of whether individuals with brain injury need a prerequisite level of awareness to learn to utilize compensatory systems or whether, for some individuals with severe awareness limitations, training can occur in the absence of insight or knowledge about the disability. Research approaches that combine the strengths of qualitative and experimental research may provide the most fruitful information. This would al-

low researchers to broaden our investigation and not only ask, "What is the nature and level of an awareness deficit?" but also, "What are the implications of the awareness deficit for the individual and his or her community?" It may be that the latter question must be answered before the former can be adequately addressed.

REFERENCES

1. Hillier SL, Metzer J, Awareness and perceptions of outcomes after traumatic brain injury. Brain Injury. 1997;11:525-536. 2. Crisp R. Awareness of deficit after traumatic brain injury: A literature review. Aust Occup Tber]. 1992; 39:15-21. 3. McGlynn SM, Schacter DL. Unawareness of deficits in neuropsychological syndromes.] Clin Exp Neuropsychol. 1989;[ [:143-205. 4. Prigatanc GP, Schacter DL. Awareness of Deficits after Brain Injury: Clinical and Theoretical Issues. New York, NY: Oxford University Press; 1991. 5. Pngatanc GP. Behavioral limitations TBI patients tend to underestimate: A replication and extension to patients with lateralized cerebral dysfunction. ClinNeuropsychol.I996;10:191-201. 6. Herbert eM, Powell GE. Insight and progress in rehabilitation. Clin Rehabil. 1989;3:125-130. 7. Lam CS, McMahon BT, Priddy DA, Gehred-Schultz A.

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Deficit awareness and treatment performance among traumatic head injury adults. Brain Injury. 1988;2:235-242. Deluca J. Rehabilitation of confabulation: The issue of unawareness of deficit. Neurorehabilitation. 1992;2:23-30. Fordyce DJ, Roueche]R. Changes in perspectives of disability among patients, staff and relatives during rehabilitation of brain injury. Rehabil Psychol. 1986; 31:217-229. Bergquist TF,Jacket MP. Awareness and goal setting with the traumaticaUy brain injured. Brain Injury. 1993;7:275-282. Deaton AV. Denial in the aftermath of traumatic brain injury: Its manifestations, measurement and treatment. Rehabil Psychol. 1986;31 :231-240. Fleming JM, Strong J. Self-awareness of deficits following acquired brain injury: Considerations for rehabilitation. Br J Occup Tber. 1995;58:55-58.

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Psychotber Theory Res Praa. 1982;19:276-288. 16. Godfrey HPD, Partridge FM, Knight RG, Bishara S. Course of insight disorder and emotional dysfunction following closed head injury: A controlled cross-sectional follow-up study. J Clin up Neuropsycbol. 1993;15;503-515. 17. Allen ce, Ruff RM. self rating versus neuropsychological performance of moderate versus severe head injured patients. Brain Injury. 1990;4:7-17, 18. Sohlberg MM, Johansen A, Geyer 5, Hoornbeek S.

Training in the Use of Compensatory Systems after Head Injury. Puyallup, Wash: Association for Neuropsychological Research and Development; 1994. 19. Rebmann MJ, Hannon R. Treatment of unawareness of memory deficits in adults with brain injury: Three case studies. Rehabil Psychol. 1995;40:279-287. 20. Cavello MM, KayT, Ezrachi O. Problems and changes after traumatic brain Injury: Differing perceptions within and between families. Brain Injury. 1992; 6;327-335. 21. Fleming JM, Strong J, Ashton R. Self-awareness of

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deficits in adults with traumatic brain injury: How best to measure? Brain Injury. 19%; 10: 1-15. 22. Brooks DN, McKinlay WW. Personality and behavioral change after severe blunt head injury: A relative's view. ] Neurol Neurosurg Psycbiatry. 1983; 49;336-344. 23. Sohlberg MM, Rawlings-Boyd J. Picture This! Strate-

gies for Assessing and Increasing Awareness of Memory Deficits. san Antonio, Tex: The Psychological Corporation; 1996. 24. Sohlberg MM, GIang A, TOOis B. SeEMA: A team based approach to serving secondary students with executive dysfunction following brain injury. Apbasia/ogy. In press. 25. Glisky EL, Schacter DL. Acquisition of domain specific knowledge in organic amnesia: Training for computer related work. Neuropsycbologia. 1989;25: 893-906. 26. Prigatano GP, Fordyce DJ. The neuropsychological rehabilitation program at Presbyterian Hospital. In: Prigatano GP. Schacter Dl, eds. Awareness of Deficit after Brain Injury. New York, NY: Oxford University Press; 1986. 27. Tyerman A, Humphrey M. Changes in self-concept following severe head injury. Int ] Rebabil Res. 1984;7;11-23. 28. McColl MA, Carlson P, Johnston J, et al. The definition of community integration: Perspectives of people with brain injuries. Brain Injury. 1998;12:15-30.

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Appendix

Self/Other Rating Via Structured Interview We want to learn which things are challenging for you (himIher) as a result of brain injury. I'm going to describe different abilities and then ask you whether each of them present (5) a major problem, (4) a medium problem, (3) a small problem, (2) no problem or no change, or (1) is an area in which you (he/she) perform above average. Cognition or Thinking Skills (Caregiver/Resident) 1. How would you describe your (his/her) attention/concentration-that is, your (his/her) ability to keep focusing on a task (ie, to not get too distracted) or to hold on to information long enough to get it into your (his/her) memory? 2. How are your (his/her) Visual/perceptual abilities? This is not how well your eyes work with or without glasses; it is abilities such as being able to judge distances or put a puzzle together, to see the whole piece of paper or television screen, or to coordinate your (his/her) eyes and hands. 3. What about memory and learning new things? How would you describe your (his/her) ability to remember events, to remember what people have told you, or to learn new procedures? your (his/her) (his/her)

4. With regard to reasoning and problem soloing, how would you describe ability to figure things out if you are confused?

5. With regard to planning and organization, how would you describe your ability to organize time, get errands done, or get to appointments?

6. How would you describe your (his/her) language or communication? Can you (he/she) express what you want to say? Do you (he/she) seem to understand what other people say to you? 7. How would you describe your (his/her)

math abilities?

8. How would you describe your (his/her)

reading abilities? Staff Subtotal I Subject Subtotal I

_ _

Social and Emotional Issues skills-that

9. How would you describe your (his/her) is, your (his/her) ability to get along with others?

interpersonal

skills or people

_____ 10. How is your (his/her) self-control or ability to monitor emotions iors? How well do you (he/she) control your anger, anxiety/worry, or impulses? _____ 11. How would you describe your (his/her) had a brain injury?

or behav-

adjustment or acceptance to having

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1998

_____

12. Is depression an issue for you (him/her)'

_____

13. How would you describe your (his/her) social support network? Staff Subtotal II

_

Subject Subtotal II ~

_

Daily living Skills _____

14. How is your (his/her)personal care, such as grooming and dressing?

_____ 15. How is your (his/her) household management (ie, taking care of your [his/ her] apartment, doing chores such as dishes, cleaning, etc)? _____ 16. With regard to accessing the community or getting around in town, how would you describe your (his/her) ability to get to places such as the store, post office, or other places outside the aparunent? _____ 17. Describe your (his/her) ability to manage money. How well do you (he/she) deal with budgeting, keeping track of your money, and banking? Staff Suhtotal III

_

Subject Subtotal III

_

Physical Abilities _____

18. How would you describe your (his/her) endurance or stamina?

_____

19. How would you describe your (his/her) balance and coordination?

_____ 20. How would you describe your (his/her) ability to use your (his/her) hands for activities such as writing or doing the dishes? 21. How would you describe your (his/her) ability to manage your physical limitations and only do what is safe and within your (his/her) capabilities?

_____

Staff Subtotal IV

_

Subject Subtotal IV

_

Leisure and Free Time _____ 22. Do you (he/she) have enough ideas and inierests for things to do during your (his/her) free time? _____ 23. How would you describe your (his/her) leisureplanning or ability to actually plan things to do when you have some free time? _____ 24. How about your (his/her) involvement in the community? Do you (he/she) do things out in the community with other people? Staff Subtotal V Subject Subtotal V

_ _

STAFFTOTAL

_

SUBJECTTOTAL

_