Fig. 1
Awareness questionnaire. Modified with permission from Sherer M, Bergloff P, Boake C, High W, Levin E. The Awareness Questionnaire: Factor structure and internal consistency. Brain Injury 1998;12:63–68
Research using the discrepancy method to evaluate impairment of self-awareness has generally demonstrated that the majority of patients underestimate their impairments or limitations compared to ratings by family or staff [5]. However the accuracy with which patients’ self-ratings reflect their actual perceived brain injury-related limitations may be questioned as it can be influenced by a number of factors [42]. These include the contribution of psychological factors such as denial of disability, the desire for a favorable presentation of self, the degree of willingness to engage in self-disclosure, and caution about how the information may be used in clinical decision making. For example, a client with TBI may be concerned that disclosing details of difficulties may delay discharge or clearance to return to work or driving [43].
A second difficulty with assessing impairment of self-awareness is establishing an objective measure of functional competency or limitations against which to compare the patient’s self-report [42]. The reports of family members may be biased as a result of denial or unawareness of the extent of disability in the early stages following TBI, especially while the patient is still in hospital, and at later stages post-injury the emotional stress, strain and fatigue associated with caring for a person with TBI may lead family members to overestimate the extent of disability [39]. While an obvious solution may be the reliance on clinicians’ ratings as a more objective source of information, these too may be limited by a lack of knowledge of the patient’s premorbid personality and abilities, as well as limited exposure to the patient’s performance in real-life environments [42].
Some studies have overcome the difficulties with the accuracy and objectivity of informants’ reports by using comparison with neuropsychological test performance. For example, Allen and Ruff [44] used a questionnaire to evaluate the self-awareness of patients with TBI and controls in the areas of sensorimotor function, attention, mathematics, language and reasoning, learning and memory, and reasoning. Self-ratings were compared with performance on neuropsychological testing to determine the level of self-awareness. Similarly, in a metamemory study, Livengood and colleagues [40] used comparison of performance on memory assessments with patient predictions of performance to measure the level of self-awareness. Self-ratings can also be compared to performance on functional tasks. For example, in acquired brain injury rehabilitation, the Assessment of Awareness of Disability (AAD) can be used following performance of activities of daily living to compare patient’s self-ratings of motor and process skills with therapist’s ratings [45].
A final issue raised with respect to using the discrepancy method for measuring self-awareness is the magnitude of the difference score required as a cut-off for identifying impairment of self-awareness [39]. As highlighted with the PRCS above, several different approaches can be applied to determine a discrepancy score, and the approach is likely to influence the number of patients who are identified as having an impairment of self-awareness [39]. The magnitude of discrepancy scores is also restricted if the informant rates the patient as being fully competent, thereby allowing little room for discrepancies in ratings to be achieved [4, 46].
Clinician Rating
The clinician rating method of assessing the level of self-awareness in patients with TBI relies upon clinical judgment to determine the extent of impairment of self-awareness using some form of rating scale. In essence this approach is not significantly different from the discrepancy approach, except that instead of informant ratings or test scores, the clinician uses his or her own knowledge of the patient’s performance for comparison with self-reports. This method is therefore reliant upon the clinician’s judgment and his or her ability not to be influenced by personal characteristics of the patient such as their likeability, attractiveness, and communication skills [29].
Clinician ratings of self-awareness are generally based on the patient’s responses to a structured interviewed, and there are several interview-based assessments including the Self-Awareness of Deficits Interview (SADI) [42], the Self-Regulation Skills Interview (SRSI) [47], and the Awareness Interview [13]. The SADI is provided in Table 1 as an illustration of the use of a clinician-rated structured interview for measuring metacognitive knowledge or intellectual awareness. The SADI measures the level of self-awareness on three subscales: (1) self-awareness of impairment, (2) self-awareness of functional implications, and (3) ability to set realistic goals [42]. The questions on the SADI build upon previous interview formats used in psychiatry [48] and social cognition research [49]. The patient’s responses are transcribed verbatim by the interviewer during the interviewer, or alternatively, interviews may be audiotaped. The responses are rated on a 4-point scale similar in format to the scale used by Bisiach et al. [50] for rating anosognosia for hemianopia, but adapted to cover the range of impairments possible following TBI. On each dimension, a score of 0 indicates no disorder of self-awareness and a score of 3 indicates a severe disorder of self-awareness, giving a total possible range of scores from 0 to 9. Detailed scoring guidelines are provided.
Table 1
Self-awareness of deficits interview a
1. Self-awareness of deficits |
Are you any different now compared to what you were like before your accident? In what way? Do you feel that anything about you, or your abilities has changed? |
Do people who know you well notice that anything is different about you since the accident? What might they notice? |
What do you see as your problems, if any, resulting from your injury? What is the main thing you need to work on/would like to get better? |
Prompts: |
Physical abilities (e.g., movement of arms and legs, balance, vision, endurance)? |
Memory/confusion? |
Concentration? |
Problem solving, decision making, organizing and planning things? |
Controlling behavior? |
Communication? |
Getting along with other people? |
Has your personality changed? |
Are there any other problems that I haven’t mentioned? |
2. Self-awareness of functional implications of deficits |
Does your brain injury have any affect on your everyday life? In what way? |
Prompts: |
Ability to live independently? |
Managing finances? |
Looking after family/manage home? |
Driving? |
Work/Study? |
Leisure/Social Life? |
Are there any other areas of life that you feel have changed/may change? |
3. Ability to set realistic goals |
What do you hope to achieve in the next 6 months? Do you have any goals? What are they? |
In 6 months time, what do you think you will be doing? Where do you think you’ll be? |
Do you think your head injury will still be having any affect on your life in 6 months time? |
If yes: How? |
If no: Are you sure? |
Scoring. Total SADI scores range from 0 to 9 with higher scores indicating greater impairment of self-awareness. Scores for each of the three subscales range from: |
0 = accurate self-awareness |
1 = mild self-awareness impairment |
2 = moderate self-awareness impairment |
3 = severe self-awareness impairment |
In designing the rating scale a number of points were taken into consideration. First, patients with TBI may display “borderline” awareness in which they acknowledge certain impairments (notably physical limitations), and ignore others (such as cognitive and personality changes), or they can describe problems that others have noticed but they are not convinced themselves that they exist [32, 51]. Second, understanding the functional implications of impairments may be limited by a lack of opportunity to try various tasks in the acute post-injury phase. Third, realistic goal setting is seen to reflect the degree of self-awareness [52], with the adjustment of pre-injury goals seen as an important step in the development of self-awareness after TBI [51]. Finally, in scoring an individual’s responses on the rating scale, the interviewer needs some background knowledge of the patient’s level of function. Therefore, a relative’s and/or clinician checklist can be used to gather collateral information to assist with assigning SADI scores. A full version of the SADI and the checklist are available from the authors.
An initial inter-rater reliability study indicated acceptable agreement between raters for total scores with an intraclass correlation coefficient (ICC) of 0.82 [42]. A second inter-rater reliability study where two raters were both present during the actual interviews yielded a higher ICC of 0.85 [53]. Test–retest reliability over a 2- to 4-week period was high (ICC = 0.92) [54]. The SADI has been significantly correlated with measures of frontal lobe functioning and injury severity [55], and with the AQ and measures of work status in individuals with acquired brain injury [56].
In contrast to the SADI which measures metacognitive awareness, the SRSI [47] was designed to measure on-line awareness skills in relation to a main area of difficulty identified by the patient. The SRSI has six items (emergent awareness, anticipatory awareness, readiness to change, strategy generation, degree of strategy use, and strategy use) which are scored by the interviewer using a 10-point rating scale. The items are grouped into three indices derived by factor analysis which include Awareness, Readiness to Change, and Strategy Behaviour Index [47]. The SRSI has test–retest (0.81–0.92) and inter-rater (0.69–0.91) reliability [47] and was significantly correlated with SADI scores and work status in adults with acquired brain injury [56].
The Awareness Interview [13] involves the use of both a clinician-rated interview and the discrepancy method by comparing neuropsychological test scores to patient responses in order to quantify self-awareness. Interview questions address the five specific areas of motor, intellectual, orientation, memory, speech or language, and visual perceptual impairment. Interview responses are scored on a 3-point scale to reflect the perceived amount of impairment on each function. These scores are then compared to ratings by a neuropsychologist on a comparable scale based on the results of neuropsychological testing of the same functions. Deviation scores are generated by comparing the two sets of scores to give scores ranging from 0 = no discrepancy to 2 = maximum discrepancy. Two additional questions (regarding awareness of the reason for hospitalization and awareness of general test performance and ability to resume normal activities) are scored using deviation scores which are then totaled with the other six deviations scores to give an Awareness Index (range 0–16). The Awareness Index therefore represents a more objective way of using clinician-rated interviews to measure self-awareness, but is related to only a limited spectrum of impairments seen following TBI and does not include items relating to executive dysfunction, and interpersonal, behavioral and emotional changes for which people with TBI often lack self-awareness.
Clinician ratings are also used to give scores on the ISA and Denial of Disability (DD) Clinicians’ Rating Scale [57]. This scale was designed to differentiate between ISA of neurological origin and DD of psychological origin in the individual patient with TBI. Both the ISA and DD scale consist of ten items which are rated as “yes” or “no” by the clinician with items rated “yes” then scored on a 0–10 scale of severity giving a maximum possible total score of 100 on each scale. Items on the ISA scale relate to a lack of spontaneous reports of difficulties, little affective reaction to feedback, “cognitive perplexity” in response to feedback or difficulties, other higher level cognitive problems such as impaired initiation, self-monitoring and planning. In contrast items on the DD include some minimal admission of difficulties, a negative affective reaction to feedback, use of arguments or excuses to explain behavior, a lack of severe impairment in initiation, planning, and self-monitoring on testing, and possible catastrophic reactions when faced with failure. Inter-rater reliability on the scales was generally high except when the clinician rated the degree of impaired self-awareness in the ISA group [57].
Observation of Behavior
The observation of task performance or behavior provides a third method of assessment of self-awareness, which particularly targets on-line awareness. Observational methods do not usually involve patient self-reports but focus on the patient’s task selection and avoidance, error detection, and error correction during task performance [26]. In one of the first studies of online awareness after TBI, Hart and colleagues [58] engaged participants in a naturalistic multi-level action task that involved making toast, wrapping a gift, and packing a lunchbox. Performances were videotaped and then analyzed to record instances of error correction (i.e., attempts to redress an error) and error detection (e.g., verbalizations, exclamations, facial expressions, and manual gestures signifying the participant’s awareness that an error had occurred). This study showed that aspects of on-line awareness could be reliably and objectively measured without reliance on self-report.
Ownsworth and colleagues [59] used a similar behavioral approach to measuring on-line awareness with a TBI participant during meal preparation and work activities. This included measures of error frequency (i.e., recording errors that compromised safety, outcome or time efficiency) and error behavior. Error behavior was systematically observed using a “pause, prompt, praise” technique which involved the therapist initially allowing a “pause” following an error to allow for self-correction, then a non-specific prompt, followed by a specific prompt if the error was not corrected. Errors were categorized as self-corrected, corrected with non-specific prompt, or corrected with specific prompt. This approach was adapted in a subsequent study [60] to classify errors as self-corrected errors (i.e., corrected after a 5–10 s pause) or therapist-corrected errors (i.e., corrected after a prompt) and checks (i.e., requests for advice or verification). In both studies, inter-rater reliability for frequency and classification of errors was established.
In summary, the standardized assessment of on-line awareness remains an under-developed area. It can be concluded that self-awareness can be measured in a number of ways which tap into different aspects of self-awareness. Therefore for any individual patient, it is advisable to use more than one approach to establish an understanding of his or her level of self-awareness across domains.
Empirical Studies of Interventions
General Approaches
The past two decades have seen an increasing emphasis on the development of interventions specifically targeting impairment of self-awareness after TBI, or incorporating self-awareness training into other cognitive rehabilitation approaches. A small but growing body of empirical studies provides evidence that self-awareness interventions can be effective in enhancing rehabilitation outcomes. Consequently, a review of the latest evidence concluded that metacognitive strategy training (i.e., targeting self-monitoring and self-regulation) should be a practice standard in the cognitive rehabilitation of people with executive dysfunction following TBI [61]. The treatment of ISA after TBI has been reviewed previously by several authors [26, 51, 62–64] and interventions described include feedback, education, behavior therapy, psychotherapy, milieu-oriented programs, game formats, group programs, and real world experiences. This section reviews the research relating to self-awareness interventions including the use of various approaches to providing feedback, predicted performance, occupation-based experiences, and the use of other techniques such as psychotherapy, education, and group programs.
Feedback Approaches
The provision of feedback to patients is a fundamental component of rehabilitation and includes feedback on test results, functional performance, and strengths and limitations. Arguably the primary rationale for providing feedback is to improve a patient’s self-awareness thereby enabling him or her to identify areas for improvement, or the need for strategies to improve performance. Timely, specific and consistent feedback is emphasized as being an important component of all awareness interventions [51, 65]. A systematic review of intervention studies which used a feedback component to improve self-awareness identified 12 studies of varied methodological quality including single case experimental designs [66]. Three studies were randomized controlled trials involving a total of 62 people with brain injury of mixed etiology [67–69]. A meta-analysis found a moderate effect size for the pooled estimate of improvement in self-awareness after completing a feedback intervention (Hedges adjusted g = 0.64, 95 % confidence interval 0.11–1.16). Furthermore, feedback interventions had large effect sizes for improving functional task performance and patient satisfaction with therapy [66]. Most feedback interventions use a combination of different forms of feedback including self-predictions and self-evaluations of performance, verbal feedback from a therapist, and in some cases, videotaped feedback. Peer feedback is also an important ingredient of group interventions.
Direct therapist feedback is a common approach to facilitating both intellectual and on-line awareness in patients with TBI [29, 51, 65]. Verbal feedback on performance is thought to be more readily accepted by the patient if provided by a trusted therapist in the context of a strong therapeutic alliance [70]. A “sandwich technique” in which negative feedback is preceded, and followed, by positive feedback is recommended [63, 71]. Klonoff and colleagues [70] described well-timed therapist feedback as an integral component of their cognitive retraining program which led to successful work placement in a case study of a patient with TBI.
While some authors have claimed that direct therapist feedback may be too confrontational and force patients to defend their confabulatory beliefs [72], research has demonstrated that, on the contrary, feedback of self-awareness assessment data led to a decrease in subjective reports of grief in participants with brain injury [73]. Another repeated measures study found that feedback from a consultant neurologist on the findings of brain scans and possible neurobehavioral outcome led to significant improvements in self-awareness as measured by the AQ and SADI in 17 patients with brain injury [74]. Interestingly, in this study, direct feedback was also associated with a decrease in self-reported symptoms of anxiety and depression.
Videotaped feedback has been recommended by several authors as an effective method for improving self-awareness of functional performance including awareness of behavioral and communication problems [62, 64, 75, 76]. Videotaped feedback has been used as an element of several self-awareness interventions with people with TBI (e.g., [59, 77]) and demonstrated to be more effective than verbal feedback and experiential feedback in a randomized controlled trial with 54 participants with TBI [78]. Schmidt et al. [78] used feedback on performance in a meal preparation task on four occasions over a 2-week period. The group that received a combination of video and verbal feedback had significantly greater gains in on-line awareness as measured by an error count and intellectual awareness measured by AQ discrepancy score. Interestingly, there were no changes in the level of emotional distress associated with any of the feedback interventions. McGraw-Hunter et al. [79] also described the use of video self-modeling to teach cooking skills to four individuals with TBI. In this study, the participants were videoed performing the cooking task with step by step direction from the researcher and any errors were edited from the video. In the experimental phase, the participants viewed the video prior to performing the cooking task with a graduated system of prompting, praise and corrective feedback. The approach was effective in achieving skill acquisition for three of the four participants within four training sessions, however the effect on self-awareness was not examined.
Predicted Performance
The technique of predicted performance involves asking patients to self-predict their performance prior to completing a task (e.g., the amount of difficulty expected, how much assistance will be needed, how long it will take, or the need for strategies). Following task performance, patients complete a self-evaluation in which they rate their performance of the task, which can then be compared with the predicted performance as well as with therapist feedback on the performance [68]. While predicted performance is most commonly used in conjunction with the performance of functional activities, it has also been used successfully to improve awareness of performance on memory tasks in single case studies [80, 81] and for verbal recall and arithmetic tasks in a single group session [82].
Occupation-Based Interventions
Experiential feedback or occupation-based interventions involve participation in real-life activities that allow the person with TBI to discover his or her own errors [71]. The selection of meaningful occupations to improve self-awareness contains elements of “supported risk taking” or “planned failure” and needs to be well-structured and supported by the therapist to minimize any emotional distress [51, 65, 83]. Even without specific intervention targeting self-awareness, individuals with TBI have reported that their self-awareness developed as a result of comparing their current ability to perform familiar occupations with their pre-injury status [83]. An occupation-based approach acknowledges that self-awareness training involves “rebuilding a sense of self” [76, p. 181]; while engaging in structured occupational experiences, the person with TBI uses self-monitoring techniques to discover strengths and weaknesses, and to develop strategies and new ways of doing things, thereby promoting self-efficacy.
Toglia [76] described a dynamic interactional approach to improving self-awareness using engagement in meaningful occupations. In the pre-activity phase, this approach involves the use of techniques such as self-prediction, guided anticipation of challenges, and strategy generation. During the activity, techniques include “stop and check” periods, self-questioning (e.g., Am I keeping track of everything?) and therapist feedback to reinforce strategy use. The post-activity phase can include various forms of self-assessment such as video feedback, self-ratings, guided questioning, and comparison of outcomes with a template or model. Journaling or structured logs may also be used to promote self-reflection on the activity, as well as broader identification of cognitive failures and strategies in daily life. Role reversal is another technique developed by Toglia for promoting self-awareness using functional activities. In role reversal, the therapist performs the activity and deliberately makes errors, while the patient observes the performance and identifies errors and suggests strategies, an approach which may be less cognitively demanding and less threatening than identifying errors during one’s own performance.
Several studies have used single case study designs to illustrate the effectiveness of occupation-based approaches using many of the above techniques to improve self-awareness after TBI [59, 77, 84, 85]. Usually occupation-based interventions are used in conjunction with other techniques such as feedback to promote self-awareness. The three randomized controlled trials in the Schmidt et al. [66] systematic review described above each involved occupation-based interventions.
In the first of these, Cheng and Man [67] used a combination of education, experiential feedback, self-prediction and goal setting to significantly improve intellectual awareness as measured by the SADI in 11 intervention participants compared to a control group. In the second study, Goverover et al. [68] used a combination of occupation-based intervention and predicted performance with ten participants with TBI when performing instrumental activities of daily living over six therapy sessions. Compared to a control group, the intervention group improved significantly in task performance and self-regulation skills. However, no significant differences were found for task-specific or general self-awareness.
The third study [69] was a randomized controlled trial with three treatment arms, one of which involved individual occupation-based support. Occupational activities were selected on the basis of participants’ goals and performed in their home or community with a focus on self-monitoring and self-correction of errors, and use of self-regulation strategies. After eight weekly intervention sessions participants in this group showed significant improvements in goal attainment, however the level of self-awareness was not explicitly evaluated in the original study. In the subsequent meta-analysis [66], it was found that compared to a wait-list control group, the standardized mean difference of discrepancy scores on the PCRS was not significant for this study by itself (Hedges adjusted g = 0.48, 95 % confidence interval of −0.41 to 1.38).
In another study, Ownsworth et al. [60] used a single case study design to demonstrate improvements in self-regulation skills in two participants with brain injury during meal preparation activities. The metacognitive skills training approach involved a “pause, prompt, praise” approach and incorporated sessions of role reversal, videotaped feedback, and post-task discussion. Specifically, during task performance, the therapist waited (pause) if the participant started to make an error to allow self-correction of the error and provided non-specific direction (prompt) if the error continued. The therapist then affirmed the participant for correct performance (praise). Compared to baseline, both participants showed a significant increase in self-corrected errors, decrease in therapist corrected errors, and decrease in number of times the participant checked to ensure accuracy of task performance. In contrast, another participant who engaged in an extended baseline of behavioral practice without metacognitive skills training showed no significant changes in error correction, and an increase in the number of checks suggesting an increased reliance on therapist support. Interestingly, the participants receiving metacognitive skills training rated themselves lower on the PCRS following the intervention suggesting more accurate self-awareness, whereas the behavioral practice participant perceived greater self-competency following the intervention.
Ownsworth et al. [86] also described the use of a similar metacognitive contextual intervention component as part of a larger program for two individuals with TBI and one with stroke to facilitate achieving paid work after long-term unemployment. Techniques used included self-prediction, self-monitoring, and self-evaluation of performance of functional tasks in the participants’ homes and workplaces. The program also included group education and support activities, family involvement, sessions with disability support counselors, and a work trial with employer education and support, so it not possible to determine which component or components of the intervention were effective. However, all three participants had maintained paid employment 6 months later.
Other Approaches
Other approaches to facilitating self-awareness following TBI include group therapy, education, adjustment counseling, and psychotherapy. Many of the studies pioneering these techniques and others described above have occurred in the context of comprehensive neuropsychological community integration programs [29, 87–89]. These programs employ holistic milieu-oriented approaches which combine cognitive retraining with psychotherapeutic interventions to address both neuropsychological and emotional or adjustment issues, and to enhance community integration outcomes. While the development of self-awareness has been a major focus of the rehabilitation programs, outcomes generally have been reported in terms of better emotional adjustment and higher levels of productivity, rather than improvements in self-awareness per se. A study by Malec and Moessner [88] however, found that 62 graduates of a comprehensive day treatment program had diminished impairment of self-awareness compared to pre-intervention. They also found that improvements in self-awareness and distress levels were associated with positive behavioral changes but not vocational outcomes. Studies such as these illustrate the difficulties associated with determining the effectiveness of specific self-awareness intervention techniques, as in practice they are usually used in combination, as well as the difficulty determining the extent that gains in self-awareness impact upon community integration outcomes.
The use of group programs is an important component of the above comprehensive treatment programs, as it allows for valuable peer feedback, role modeling and support during group discussions [29]. There have, however, been few studies which have specifically examined the use of group interventions to facilitate self-awareness. Ownsworth, McFarland and Young [90] conducted a 16-week group support and psychoeducation program with 21 participants with long-term acquired brain injury. The participants showed significant improvements in levels of on-line self-awareness and strategy use, as well as improved psychosocial function, and gains were maintained at a 6-month follow-up.
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