ABSTRACT
Objective
Studies utilizing the discrepancy model of the Mayo-Portland Adaptability Inventory-4 (MPAI-4) have commonly used the cognitive and physical domains to estimate self-awareness. This study included other aspects of self-awareness such as awareness of one’s social and emotional status and daily functioning to explore their effects on caregiver burden for ABI survivors.
Methods
We studied 64 patient-caregiver pairs up to 29 years post-discharge from a holistic, milieu-oriented outpatient neurorehabilitation program. Discrepancy scores between ABI survivors’ and caregivers’ reports on the MPAI-4 subscales (i.e. Abilities, Adjustment, and Participation) and Total Score were used to determine self-awareness. Caregiver burden was measured using the Zarit Burden Interview (ZBI).
Results
Exploratory linear regression analyses revealed that caregiver burden derived from the ZBI was predicted by the discrepancy scores generated from the Abilities (p < 0.0001), Adjustment (p < 0.01), Participation subscales (p = 0.01), and Total Score (p < 0.001), respectively. Among the exploratory models generated, the Total Score model had the highest predictive value (R2 = .33) for caregiver burden.
Conclusions
Measures of self-awareness should be comprehensive by considering diverse components of self-awareness. Increasing ABI survivors’ self-awareness in different domains has the potential to effectively alleviate caregiver burden.
Introduction
Prigatano and Schacter (Citation1) defined self-awareness as ‘the capacity to perceive the “self” in relatively “objective” terms while maintaining a sense of subjectivity’ (p. 13). It is a complex construct with a multidimensional nature and can involve many different functions, including physical, cognitive, social/interpersonal, emotional, and functional competencies in everyday life (Citation2–5). Individuals with neurological conditions, such as acquired brain injury (ABI), commonly exhibit impaired abilities to objectively perceive the effects of their disorders on their functional limitations (Citation6–8). The incidence of clinically significant impaired self-awareness (ISA) reportedly ranged from 20% to 97%, depending on the population, measurement, injury severity, and amount of time since the brain injury (Citation5,Citation7–9). After ABI, brain activation and connectivity varies depending on the level of awareness measured (e.g., right frontal lobe, white matter, and the default mode network) (Citation10).
Self-awareness is difficult to measure due to its subjective nature (Citation5). Currently, there are four indirect methods to measure self-awareness: comparison of self-rating to other-rating (self-proxy rating discrepancy model), comparison of self-perceptions to scores on cognitive tests (performance-based discrepancy), structured clinical interviews, and self-detection of errors during a cognitive task (i.e., online awareness) (Citation4,Citation5,Citation7). Among them, the self-proxy rating discrepancy method is the most commonly used approach (Citation5). Based on this model, different assessment tools were used by comparing a patient’s subjective ratings of his/her cognitive, emotional, interpersonal, or behavioral functioning with an informant’s ratings (a relative’s or a clinician’s) in these areas.
Although initially used as an outcome measure, the Mayo-Portland Adaptability Inventory (MPAI) has been adapted to assess a patient’s self-awareness using the self-proxy discrepancy approach (Citation4,Citation11–13). The first study utilizing an early version of the MPAI as a self-awareness measure involved all sub-categories: mobility; communication; emotions; independent living skills; and relationships (Citation12). However, three subsequent studies utilized the Abilities subscale of the MPAI-4 as the single measure for the self-proxy rating discrepancy method (Citation11,Citation13,Citation14). Yet, self-awareness contains different domains, including either internal, abstract processes (e.g., cognitive or emotional functioning) or an external, visible judgment (e.g., physical or observable daily activities) (Citation7). Using the MPAI to measure self-awareness will be more comprehensive if multiple areas of functioning are included.
The literature has shown that ABI survivors with ISA have worse outcomes when compared to those with unimpaired self-awareness (USA), including measures of adherence to treatment, treatment performances, goal-setting, community reintegration, psychosocial and vocational functioning, and quality of life (Citation9,Citation15). Due to their overestimation of functional capacities, associated greater neurobehavioral impairments, and the above mentioned poor treatment and functional outcomes, ABI survivors with ISA require extensive assistance from their caregivers for daily living and thus may cause acute or chronic distress to their caregivers (Citation16,Citation17). This was also more recently replicated by Rubin, Klonoff, & Perumparaichallai, who reported that ABI survivors with ISA overestimated their functional capabilities and are likely at greater risk of engaging in unsafe behaviors and activities. These resulted in more supervision by caregivers and stressful responses from their caregivers, thereby causing greater caregiver burden (Citation13). An elevated level of caregiver burden is associated with emotional and physical diseases, negative social and financial changes, and decreased quality of life and spiritual functioning, which negatively impact caregiving ability and in turn ABI survivors’ functional outcomes (Citation15,Citation18–20).
Holistic neurorehabilitation programs provide comprehensive and interdisciplinary care to ABI survivors and their caregivers with an aim to promote functional, cognitive, and psychosocial outcomes and reduce the burden of care (Citation21,Citation22). Different dimensions of self-awareness are addressed in various individual and group therapies, including metacognitive or intellectual awareness (e.g., self-knowledge about one’s difficulties or metacognitive reflection), online or emergent awareness (e.g., the ability to recognize a problem when it occurs such as detecting errors on a cognitive retraining task), and anticipatory awareness (e.g., the ability to foresee a problem as a result of their ABI) (Citation4,Citation9,Citation22).
The authors’ previous study demonstrated that ABI survivors’ impaired awareness of their physical and cognitive limitations (as measured by the Ability subscale of the MPAI-4) significantly impacted caregiver burden (Citation13). The current study aims to investigate the impact of different components of self-awareness (including adjustment, abilities, participation, and the Total Score based on the MPAI-4) on caregiver burden following holistic neurorehabilitation. The alternative hypothesis is that different components of the MPAI-4 (Ability, Adjustment, Participation, and Total Score) predict caregiver burden and the Total Score of the MPAI-4 has the greatest predictive power.
Methods
Participants
Participants were 64 ABI survivor-caregiver pairs, who attended a holistic, milieu-oriented neurorehabilitation program, the Center for Transitional Neuro-Rehabilitation (CTN) at St. Joseph’s Hospital and Medical Center. They completed one or more of the following neurorehabilitation programs: (a) Home Independence Program for home and community independence (28.1% of the sample), (b) Work/School Re-Entry Program to return to competitive employment or academic pursuits (56.2% of the sample), or (c) a combination of both programs (15.7% of the sample). Participants were recruited from a larger study investigating psychosocial outcomes up to 30 years following holistic neurorehabilitation. Survivors were discharged from neurorehabilitation between 1989 and 2017. Please see for injury-related and demographic variables for the ABI survivors and the demographic variables of their caregivers.
Table 1. Injury-related and demographic variables of ABI survivors.
Materials
Mayo-Portland Adaptability Inventory-4 (MPAI-4)
The MPAI-4 is a 29 item self-report measure of ABI survivors’ physical, cognitive, emotional, and psychosocial functioning rated by themselves and their caregivers, with a five-point scale ranging from 0 (None) to 4 (Severe Problem). It has been used as a primary outcome measure for patients with ABI (Citation23,Citation24). It produces three subscale scores: Ability Index, Adjustment Index, and Participation Index, as well as a Total Score. Three subscale scores and Total Score are on a T-distribution. Higher scores indicate worse functioning. Prior studies have demonstrated good reliability and validity for three indices and the full measure (Citation23,Citation24). Using the discrepancy model, the scores based on the patient report and the caregiver report for the three MPAI-4 subscales and the Total Score were compared. ABI participants who reported significantly better functioning than their caregivers on these indices (more than half a standard deviation) were categorized to have ISA on that particular subscale; otherwise, they were considered to have USA (Citation11,Citation13).
Zarit burden interview (ZBI)
The ZBI was originally designed to assess the level of burden in caregivers of patients with dementia. It has been widely applied to studies related to patients with ABI with demonstrated psychometric adequacy (Citation25). Caregivers completed 22 questions with a five-point scale ranging from 0 (never) to 4 (nearly always). Total scores range from zero to 88. The severity of caregiver burden can be categorized into four groups: mild burden (0–20), mild to moderate burden (21–40), moderate to severe burden (41–60), and severe burden (61–88) based on Zarit score cutoffs.
Procedure
This study was approved by the Institutional Review Board (IRB). Initial invitation to participate in the study was distributed through a 30-year reunion event in October 2016, using multiple modalities (i.e., mail, e-mail, phone, social media posts, and a brain injury support group newsletter). Data were collected in the following ways: (a) in-person in the clinic independently or with assistance from research staff; (b) over the phone with research staff; or (c) independently at remote locations using a website link. ABI participants and their caregivers completed the measures separately.
Data analysis
Descriptive statistics were used to summarize demographics, injury-related, and caregiver-related characteristics. Between-group comparisons were conducted using two-tailed t-tests and chi-square (χ2) analyses. Effect sizes are reported as Cohen’s d. for demographics and injury-related comparisons; p-values of less than .05 were consistently interpreted as statistical significance. When testing the hypothesis, a Bonferroni correction was utilized and p < 0.01 was considered statistically significant. A series of linear regression analyses were performed to explore whether different components of self-awareness derived from the subscale scores and Total Score of the MPAI-4 can predict caregiver burden noted on the ZBI.
Results
provides classifications of survivors into ISA and USA groups based on all four MPAI-4 discrepancy models (i.e., Ability, Adjustment, and Participation subscales and Total Score). Of the ABI participants, 41% demonstrated ISA in the physical and cognitive domains (Abilities subscale); 48% and 47% demonstrated ISA in emotional and social domains, as well as daily activities (Adjustment and Participation subscales).
Table 2. Classifications of ISA and USA based on four discrepancy models.
The clinical and sociodemographic variables of the survivors and caregiver variables were compared for the ISA and USA groups based on the four discrepancy models. The results showed that the ISA and USA groups, classified by either the MPAI-4 Ability or Adjustment discrepancy models, did not significantly differ (p > 0.05) in regards to age at the time of injury, duration of ABI, length of stay, education at admission, race/ethnicity, injury etiology, rehabilitation program, relationship to caregiver, or caregiver gender. However, the USA group was significantly further post-discharge from holistic neurorehabilitation than the ISA group based on these two models (p = 0.02, Cohen’s d = .64, medium effect size for the MPAI-4 Ability model; p = 0.04, Cohen’s d = .52, medium effect size for the MPAI-4 Adjustment model). The ISA and USA groups, classified by the MPAI-4 Participation and Total Score discrepancy models, did not significantly differ in any of the clinical and sociodemographic variables. The ISA and USA groups based on the MPAI-4 Participation and Total Score discrepancy models demonstrate a better match in these clinical and demographic variables.
Simple linear regression analyses demonstrated that ABI participants’ reports of better functioning on the MPAI-4 Total Score, better social life, and shorter length of time between discharge and survey were significantly predictive of decreased levels of caregiver burden based on the MPAI-4 Ability, Adjustment, Participation, and Total Score discrepancy models (p < 0.001, p = 0.01, p < 0.01, p < 0.001; ).
Table 3. Caregiver burden linear regression based on four MPAI-4 discrepancy models.
Discussion
The current study explored the impact of multiple domains of self-awareness derived from the MPAI-4 on caregiver burden. This multi-domain approach for evaluating self-awareness using the MPAI-4 is consistent with previous studies, which incorporated all subscales and the Total Score (Citation12,Citation26). This approach is also compatible with past studies that used other self-awareness measures and most of the studies using the self-proxy discrepancy model (Citation2,Citation4,Citation27,Citation28).
In the present study, the incidence of ISA as measured by three subscale scores and Total Score of the MPAI-4 ranges from 37% to 48%, which appears to be in the medium range when compared to past studies (Citation5,Citation7–9). ABI survivors appear to be more aware of the functional deficits in their physical and cognitive domains than in emotional and social domains and daily activities. This is grossly in accordance with past research, which indicated more severe ISA for behavioral, affective, and social functions (Citation3,Citation7). However, as conflicting results have also been reported between different domains, item analysis or re-categorization of domains in the future may assist with a comparison of different self-awareness domains across measures or future tool development (Citation4,Citation7).
Current findings indicate that different components of self-awareness together with other predictors all affected the level of caregiver burden. The inclusion of different components of self-awareness in the current study is in accordance with other patient-proxy discrepancy measures for ISA covering cognitive, emotional, and social domains, and daily activities (Citation4). For example, the Patient Competency Rating Scale (PCRS), the most widely used measure of awareness, revealed four subdomains after factor analysis: activities of daily living; interpersonal; emotional; and cognitive functioning (Citation7,Citation29). Thus, the multi-domain approach is important to consider when exploring the relationship between self-awareness and caregiver burden.
Pertaining to different components of self-awareness, Prigatano and Altman (Citation30) reported that ABI survivors overestimate their performance on items requiring a non-visible, abstract appraisal such as cognitive, emotional, or social functioning while more accurately estimating items involving concrete and visible judgment such as physical or observable activities of daily living. Among MPAI-4 subdomains, the Ability subscale measures physical and cognitive areas; the Adjustment subscale largely involves ratings of mood concerns; and the Participation subscale focuses on engagement in life, including social participation. Based on Prigatano’s and Altman’s prediction (Citation30), ABI survivors are more aware of their limitations on physical functioning and observable daily activities, which contributes to a more accepting or collaborative attitude and less risk-taking behaviors. This in turn may decrease caregivers’ emotional distress and promote problem-solving for ABI survivors’ difficulties.
On the other hand, ABI survivors may be less aware of their status requiring internalized, abstract judgment such as their cognitive impairments and emotional symptoms (Citation30), as measured by the MPAI-4 Ability and Adjustment Indexes. Their lack of awareness in these areas may result in a reluctance to use compensatory strategies for their cognitive impairments, poorer decision-making and problem-solving, and more emotional reactivity, which possibly increases their caregivers’ emotional strain, disappointment, feelings of isolation, and emotional conflicts with them, as measured by the ZBI (Citation31).
Among these four discrepancy models, the Adjustment and Participation models have less predictive power. ABI survivors and their caregivers reported less symptom severity approximately 12 years after their ABI and eight years after they were discharged from the program (see ). This may be due to better emotional adjustment to their disabilities in the chronic phase of their recovery, which contributes less to their caregivers’ feelings of burden. The Participation model’s less predictive power is likely consistent with Prigatano and Altman’s prediction, where ABI survivors have a more accurate assessment of their level of daily functioning (Citation30). The Total Score model, which involves scores from all subscales, has the highest predictive value for the level of caregiver distress, as per the alternative hypothesis. It is recommended that the Total Score model be used rather than the Ability subscale model when utilizing only a single indicator from the MPAI-4 to measure self-awareness.
Regarding how ISA affects caregiver distress, many studies have emphasized the association between ISA and executive dysfunction (Citation7). ABI survivors with ISA usually demonstrate impaired judgment, cognitive flexibility, self-monitoring, problem-solving abilities, decision-making, abstraction (concreteness), initiation, and/or impulsivity, which makes care management and social, professional, and familial reintegration challenging (Citation22,Citation32). Caregivers are forced into a situation whereby they have to function as their loved ones’ ‘frontal lobe’ or ‘auxiliary ego’ and guide them through various basic and instrumental activities of daily living (Citation22). From the standpoint of social cognition, ABI survivors’ compromised abilities to recognize and regulate emotions (e.g., apathy), difficulty describing their emotional status, reduced ability for perspective-taking, and possible behavior disturbances also add to the stress of communication with caregivers (Citation16,Citation33). Many caregivers expressed distress or grief from interacting with their loved ones who appear to mentally regress to an egocentric adolescent or early school-age mentality and are not capable of assuming their pre-injury roles (Citation34). Related variables such as time spent with ABI survivors and feelings of loneliness have been identified as the predictors for caregiver burden (Citation31,Citation35). These findings support the importance of investigating ABI survivors’ level of self-awareness in cognitive, emotional, and social domains for predicting the level of caregiver burden.
Clinically, improving self-awareness has been a major focus of neurorehabilitation programs (Citation8,Citation15). In holistic milieu-oriented programs, the impact of cognitive, physical, interpersonal, and emotional deficits, as well as metacognitive challenges, are comprehensively addressed to maximize outcomes (Citation36). As Prigatano (Citation37) pointed out, providing different methods may improve self-awareness ‘in dimensions other than cognitive functioning per se,’ (p. 25) which suggested the importance of considering the multi-domain approach for improving self-awareness. Other researchers have used different terms to emphasize the same theme, such as multi-context or a biopsychosocial approach (Citation38,Citation39). The current study further confirms the importance of providing interventions for different domains of ISA so as to alleviate caregiver distress. ABI survivors can benefit greatly from predicting, assessing, anticipating, and monitoring different domains of functioning with various forms of feedback from their caregivers or therapists (Citation9,Citation39). Considering multiple domains should also help to tailor interventions for specific domains of ISA and thus be more individualized, efficacious, and cost-effective.
This study has several limitations. Using the discrepancy model for measuring the level of self-awareness assumes that caregiver reports are an objective and accurate reflection of their loved one’s level of functioning (Citation13,Citation40). Some studies found the self-other discrepancies in certain domains (e.g., emotional) were greater with the caregiver than with clinician’s ratings, which suggested possible biases in caregiver ratings (Citation7). Others pointed out that various factors can influence caregivers’ perceptions of their loved ones, such as stress levels, the personality of the caregiver, and length of time post-injury (Citation41). Another limitation of the study is limited information about the caregivers. Knowing their mood status, employment status, and available support systems could shed more light on the nature of their caregiver burden and distress.
Based on the discrepancy model, the current study utilized a categorical approach (i.e., ISA and USA) to define self-awareness. Studies, however, pointed out a different typology of self-awareness (e.g., aware, hyperaware, and unaware) (Citation7). Each type of self-awareness may represent different psychological or neuropsychological profiles and warrant further investigation. Others suggested self-awareness be measured as a continuous variable as the categorical approach may oversimplify the complex phenomenon of self-awareness (Citation7). Future studies should take into account different ways of defining self-awareness to better understand the phenomenon of ISA and its relationship with other measures, including caregiver burden.
Finally, as indicated in a previous study (Citation13), current results may incur possible bias and issues with generalization as the recruitment of participants was not randomly selected and the study was conducted in the context of holistic milieu-oriented neurorehabilitation versus a general outpatient rehabilitation program. Future research should also incorporate online/emergent awareness and anticipatory self-awareness to better understand the nature of ISA and its impact on caregiver burden and evaluate the generalization of results to more typical neurorehabilitation programs.
Conclusion
Measures of self-awareness should consider the multi-domain approach for better functional outcomes. Different components of the MPAI-4 (Ability, Adjustment, Participation, and Total Score) significantly predict caregiver burden. Increasing ABI survivors’ self-awareness in different domains has the potential to effectively alleviate caregiver burden. Among them, the Ability and Total Score models have higher predictive value than the Adjustment and Participation models. It is recommended that the Total Score be used for the self-proxy discrepancy approach when considering only a single indicator of the MPAI-4 to measure self-awareness. Future studies should further investigate different dimensions and measurement approaches for self-awareness and characteristics of caregivers to better understand the relationship between self-awareness and caregiver burden.
Acknowledgments
A special thank you to Edward Koberstein for his thoughtfulness and proficiency in technical and editing support.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Additional information
Funding
References
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