Abstract
BACKGROUND:
Caregiver burden is experienced by a significant number of caregivers of survivors of acquired brain injury (ABI). It is known that self-awareness can impact functioning following ABI. However, the impact of self-awareness on caregiver burden has not been established.
OBJECTIVE:
To investigate the relationship between self-awareness and caregiver burden following ABI.
METHODS:
We studied 57 patient-caregiver pairs up to 28 years post-discharge from a post-acute comprehensive holistic milieu-oriented neurorehabilitation program. The Mayo-Portland Adaptability Inventory-4 (MPAI-4) was completed by survivors of ABI and their caregivers. Discrepancies in reports between survivors of ABI and their caregivers were used to determine self-awareness. Additionally, caregivers completed the Zarit Burden Interview (ZBI).
RESULTS:
Survivors of ABI with impaired self-awareness reported significantly higher levels of functioning than survivors of ABI with unimpaired self-awareness (p < 0.001). Unimpaired self-awareness (p < 0.001) and lower survivor self-reported MPAI-4 Total Score (p < 0.001) significantly predicted caregiver burden.
CONCLUSIONS:
Survivors of ABI’s level of functioning and their level of self-awareness significantly impacted caregiver burden. Survivors of ABI with impaired self-awareness not only lack insight into their functional abilities but also tend to overestimate their capabilities; this likely contributes to the need for greater levels of supervision and worsened caregiver burden.
Introduction
Self-awareness has been defined as the “capacity to perceive the ‘self’ in relatively ‘objective’ terms while maintaining a sense of subjectivity” (Prigatano & Schacter 1991, p. 13). It can be affected by neurological factors resulting in a syndrome known as anosognosia, which may be related to injuries to the right hemisphere, particularly the frontal and parietal lobes (Blumenfeld, 2010). Self-awareness can also be influenced by psychological factors, such as denial, which provide a defense to feeling overwhelmed by deficits or functional changes following acquired brain injury (ABI) (Prigatano, 2012).
Measuring self-awareness can be a difficult task, and no criterion standard measurement tool exists. Three common methods for assessing self-awareness include: clinician ratings; discrepancy scores between the patient’s self-rating and a seemingly more objective reporter, usually a relative, significant-other, or clinician; and discrepancy scores between the patient’s self-rating and performance on neuropsychological measures (Sherer, Oden, Bergloff, Levin, & High Jr., 1998). Using discrepancy scores between patient-report and significant-other-report has been found to be more sensitive to impaired self-awareness than single item ratings of self-awareness (Geytenbeek, Fleming, Doig, & Ownsworth, 2017); and a stronger predictor of employment than clinician ratings of self-awareness (Sherer, Bergloff, Levin, High Jr., Oden, & Nick, 1998).
Self-awareness appears to significantly impact functioning following traumatic brain injury (TBI). Survivors of TBI who are aware of their cognitive abilities are more likely to gain employment than survivors of TBI with impaired self-awareness (Kelley et al., 2014). Long-term impaired self-awareness following an ABI (Mean: 7.41 years post-injury) has been linked to worse vocational outcomes and living situations, distractibility, maladaptive behavior, and perseverative tendencies (Trudel, Tyron, & Purdum, 1998). Increased self-awareness over a one-year follow-up period has been associated with increased levels of employment (Ownsworth, Desbois, Grant, Fleming, & Strong, 2006); however, the cause and effect of this relationship is unclear.
Caregiver burden is also an important consideration following TBI, and Qadeer et al. (2017) suggest that insufficient attention has been given to this problem. Over one-third of caregivers endorsed clinically significant symptoms of distress (e.g. depression, anxiety, and difficulties with social adjustment) in follow-up studies conducted six-months and one-year post severe TBI (Marsh, Kersel, Havill, & Sleigh, 1998 & Marsh, Kersel, Havill, & Sleigh, 1998a). Similarly, one-year after severe TBI, caregiver burden was present in 50% of caregivers (16% classified as high caregiver burden and 34% classified as moderate caregiver burden) and was related to caregiver loneliness and caregiving responsibilities (Manskow et al., 2015). Additionally, over the subsequent year, caregiver burden increased in 30% of caregivers and life satisfaction decreased due to social isolation (Manskow et al., 2017). It seems that a significant number of caregivers of survivors of TBI experience a great deal of distress due to social isolation, loneliness, and time spent in caregiving activities.
It has been suggested that there is a need for hospitals and rehabilitation programs to address caregiver burden directly in the form of education and counseling sessions (Qadeer et al., 2017). Comprehensive holistic neurorehabilitation programs incorporate family and caregiver involvement to enhance ABI recovery while also focusing on increasing survivors’ level of self-awareness. Families and caregivers participate in conjoint psychotherapy sessions as well as caregiver support groups that provide education and support aimed at reducing caregiver burden (Klonoff, 2014). Additionally, in comprehensive holistic neurorehabilitation programs, self-awareness of survivors of ABI is addressed through meta-cognitive strategies that are learned, practiced, and reviewed during psychotherapy sessions, cognitive retraining activities, and rehabilitation therapies (Cicerone et al., 2011, 2019; Klonoff, 2010).
Objectives
The purpose of the current study was to better understand the relationship of survivors of ABI’s (who will be referred to as “survivors” henceforth) self-awareness on caregiver burden following comprehensive holistic neurorehabilitation.
Null hypothesis
There are no significant differences in caregiver burden based on the survivors’ level of self-awareness.
Methods
This study protocol was approved by the Institutional Review Board (IRB) at the facility where the study was conducted. The procedures of the study were in accordance with the standards of the IRB.
Participants
The present sample included 57 survivor-caregiver pairs recruited from a larger study investigating psychosocial outcomes up to 30 years following a milieu-oriented holistic neurorehabilitation program (The Center for Transitional Neuro-Rehabilitation). Participants were discharged from neurorehabilitation between 1989 and 2016. Notably, the long-term follow-up period caused difficulty reaching some potential participants.
Participants were predominantly Caucasian (79%) middle-aged (mean [M]±SD, 44.83±16.67) men (61%) with an average of 14.30 years of education at admission (SD±2.38). The mean age of injury for the participants was 32.71 years old (SD±16.62). They received an average of 12.27 months of therapies (SD±6.30) and completed the survey an average of 8.22 years after discharge from neurorehabilitation (SD±6.91; range: 0–27.5 years). Participants attended either a Home Independence Program (25% of sample), a Work/School Re-Entry Program (59% of sample), or a combination of both programs (16% of sample) (Table 1).
Total sample demographics
Total sample demographics
Neurorehabilitation goals for the Home Independence Program focused on enhancing functional independence at home and in the community. Goals for the Work/School Re-Entry Program were to return to part-time or full-time competitive employment or academic pursuits. In most cases, patients with more severe physical and/or neurological deficits were limited to participation in the Home Independence Program; however, other considerations (e.g., insurance coverage and medical stability) are factored into program selection. In this sample, 61% of participants suffered a TBI, 30% suffered a cerebral vascular accident (CVA), 4% suffered an anoxic injury, <2% had a brain tumor, <2% had progressive multifocal leukoencephalopathy, and <2% (N = 1) had no available documentation regarding etiology. Glasgow Coma Scale (GCS) or Mayo Severity Index Scores were available for all 35 participants who experienced a TBI; 11 were classified as severe (31%), 23 were moderate to severe (66%), and 1 was mild (3%). Caregivers were primarily female (61%) and consisted of parents (51%), spouses/significant others (44%), and children (5%) (Table 1).
Mayo-Portland Adaptability Inventory-4
ABI participants and caregivers independently completed the Mayo-Portland Adaptability Inventory-4 (MPAI-4), which was used to measure overall functioning as well as self-awareness. The MPAI-4 is a 30-item questionnaire designed to investigate physical, cognitive, and psychosocial limitations that commonly occur after ABI. The items are rated using a five-point scale ranging from “no problem” to a “severe problem.” It produces three subscale scores: Abilities, Adjustment, and Participation, as well as a Total Score. The MPAI-4 has strong overall person (r = 0.88) and item (r = 0.99) reliability. Internal consistency (Pearson Reliability = 0.88) and inter-rater agreement between self and significant-other ratings on the MPAI-4 is within acceptable limits, and it has been suggested that inconsistencies between self and significant-other ratings are due to decreased self-awareness following ABI (Malec, 2005).
Utilizing discrepancy scores on the Abilities subscale of the MPAI-4 has been found to be an effective way of measuring impaired self-awareness (Geytenbeek, Fleming, Doig, & Ownsworth, 2017). In the present study, self-awareness was determined by comparing ABI participant-report and caregiver-report on the MPAI-4 Abilities subscale. The ABI participants were divided into two groups based on their level of self-awareness. ABI participants who reported significantly better functioning than their caregivers on the MPAI-4 Abilities subscale (more than half a standard deviation) were considered to have impaired self-awareness. ABI participants who reported similar (within a half standard deviation) or worse functioning than their caregivers on the MPAI-4 Abilities subscale were considered to have unimpaired self-awareness.
Zarit Burden Interview
Caregivers completed the Zarit Burden Interview (ZBI) to measure levels of caregiver burden (Zarit, Reever, & Back-Peterson, 1980). The ZBI is a 22-item self-report measure that uses a five-point scale ranging from “never” to “nearly always.” The ZBI has been found to correlate to other measures of burden (Pearson’s correlation coefficient, ρ= 0.53 to.73) (Seng et al., 2010). The ZBI was designed to assess caregiver burden in caregivers of patients with dementia; however, it has been found to be a valid (convergent validity; r = 0.47 and.54) and reliable (item-item correlation r = 0.37) measure for examining caregiver burden in other medical conditions, such as patients with heart failure (Al-Rawashdeh, Lennie, & Chung, 2016). Additionally, Siegert et al. (2010) suggest that the ZBI may be useful for examining caregiver burden in survivors of ABI, particularly due to the ZBI’s emphasis on both personal and role strain. In the present study, the ZBI was considered a useful indicator of caregiver burden in an ABI population because of the similarities between caregiving for the physical and cognitive difficulties associated with dementia, heart failure, and ABI; the chronic nature of these conditions; and initial evidence that it is useful in measuring caregiver burden following ABI.
Procedure
The current study employed a survey that was distributed at a 30-year reunion event in October 2016, with phone call and email follow-up for survivors and caregivers until December 2018 for those who could not attend the event. Participants were given the option to complete the survey in the clinic, over the phone with a member of the research staff, or online.
Data analysis
Between groups comparisons were conducted using two-tailed t-tests, chi square (χ2) analyses, and ANCOVAs. For background and demographic comparisons, p-values were consistently interpreted as p < 0.05 indicating statistical significance. When testing hypotheses, a Bonferroni correction was utilized and p < 0.01 was considered statistically significant. Covariate analysis was done when appropriate. A linear regression analysis was performed to assess predictability of caregiver burden. The SPSS software package, version 22, was used for all statistical analyses.
Results
The discrepancy score described in the methods section classified 56% of the ABI participants as having unimpaired self-awareness (N = 32) and 44% of ABI participants as having impaired self-awareness (N = 25). The unimpaired and impaired self-awareness groups did not significantly differ (p > 0.05) in regards to age, age at time of injury, duration of ABI, education at admission, gender, race/ethnicity, injury etiology, rehabilitation program, relationship to caregiver, or caregiver gender. However, the unimpaired self-awareness group was significantly further post-discharge from holistic neurorehabilitation (p = 0.02; Cohen’s d = 0.65, medium effect size) than the impaired self-awareness group (Table 2).
Demographics based on self-awareness classifications
Demographics based on self-awareness classifications
*Data not available for one participant in the unimpaired self-awareness group; †Additional injury types were not included in the table due to negligible number of participants.
Analyses were conducted to validate self-awareness classifications based on caregiver-ABI participant discrepancies on the MPAI-4 Abilities subscale. To do so, MPAI-4 single-item ratings of self-awareness were compared to discrepancy score classifications using χ2 analyses. Caregiver MPAI-4 single-item ratings of ABI participant level of self-awareness tended to be consistent with the self-awareness classifications based on the discrepancy model (χ2 = 0.04; Phi = 0.27, medium effect size). However, ABI participant single-item ratings of their own self-awareness were not consistent with discrepancy model classifications (χ2 = 0.93) (Table 3). The majority (75%) of ABI participants classified as having unimpaired self-awareness accurately reported that difficulties recognizing their deficits do not interfere with their functioning. In contrast, only 24% of ABI participants who were classified as having impaired self-awareness accurately reported that difficulties recognizing their deficits interfere with their functioning. Therefore, as expected, ABI participants with unimpaired self-awareness have a better understanding of the impact of their ABI on their functionality than ABI participants with impaired self-awareness.
Single-item and discrepancy method comparison
The relationship between the unimpaired and impaired self-awareness groups on their level of functioning as reported by their caregivers on MPAI-4 Total Score was examined using an ANCOVA. Caregivers reported that the impaired self-awareness group tended to have worse functioning on the MPAI-4 Total Score (p = 0.02; Cohen’s d = 0.68, medium to large effect size) than the unimpaired self-awareness group. The relationship between the unimpaired and impaired self-awareness groups on their level of functioning as reported by themselves was also examined employing the MPAI-4 Total Score. The ABI participants with impaired self-awareness reported significantly better functioning on the MPAI-4 Total Score (p < 0.001; Cohen’s d = 1.03, large effect size) than the ABI participants with unimpaired self-awareness (Table 4). Length of time between discharge from holistic neurorehabilitation and the survey was controlled for during these analyses. Overall, caregivers indicated that survivors with impaired self-awareness had worse functional abilities than the unimpaired self-awareness group; however, survivors with impaired self-awareness reported that they had better functional abilities than the unimpaired self-awareness group.
MPAI-4 Total Score
*Lower MPAI-4 Scores indicate better levels of functioning; †Statistical analyses controlled for the length of time since discharge.
A linear regression analysis showed that unimpaired self-awareness (p < 0.001) and ABI participants’ report of better functioning on the MPAI-4 Total Score (p < 0.001) were significantly predictive of decreased levels of caregiver burden (Table 5). The neurorehabilitation program, ABI participants’ current age, and length of time between discharge and surveys were included in this model but did not make statistically significant contributions. Caregiver perception of ABI participant functioning was not included in this model to avoid potential confounds.
Caregiver burden linear regression
Self-awareness following brain injury is known to significantly impact important functional outcomes including employment, living situation, and adaptive behaviors (Kelley et al., 2014; Ownsworth, Desbois, Grant, Fleming, & Strong, 2006; Trudel, Tyron, & Purdum, 1998). However, less is known about the relationship between self-awareness following an ABI and caregiver burden.
The discrepancy method used to determine level of self-awareness in this study was consistent with caregiver ratings of survivors’ self-awareness, suggesting that this method accurately categorized survivors’ self-awareness. Previous studies have utilized similar methodology to determine self-awareness and have found it to be a relatively accurate and effective way to examine self-awareness following TBI (Geytenbeek, Fleming, Doig, & Ownsworth, 2017).
The primary goal of this study was to examine the relationship between self-awareness following an ABI and caregiver burden. The present study indicates that unimpaired self-awareness and better functional abilities of survivors are related to lower levels of caregiver burden. It is likely that the need for constant supervision of survivors with impaired self-awareness and reduced functional abilities results in higher levels of caregiver burden. Additionally, results of this study showed that survivors with impaired self-awareness greatly overestimate their level of functioning. Survivors with impaired self-awareness who greatly overestimate their functional abilities are likely at greater risk of engaging in unsafe behaviors and activities (e.g., cooking, driving, etc.) when left unsupervised. This may be particularly stressful for caregivers and may result in caregivers spending more time, physical and emotional energy, and money to ensure that their loved one is under constant supervision, and thus leaves less time, energy, and money for self-care activities and social support. This is consistent with previous findings that caregiver burden is related to caregiver loneliness, poor perceived social support, and caregiving responsibilities for a patient with severe disability following a TBI (Manskow et al., 2015, 2017).
Holistic neurorehabilitation approaches incorporate caregivers into the treatment model by providing emotional support and psychoeducation, emphasizing the importance of self-care, and providing community resources for caregivers, which may help alleviate caregiver burden (Klonoff, 2010, 2014). Additionally, holistic neurorehabilitation approaches that address metacognitive functions (e.g., direct instruction on self-monitoring, emotional control, and control of cognitive processes) have been found to increase self-awareness after TBI (Kennedy et al., 2008). It is well known that holistic neurorehabilitation addresses self-awareness (Klonoff, 2010) and it is currently considered a practice standard (Cicerone et al., 2011, 2019). However, only 56% of the current sample was classified as having unimpaired self-awareness despite receiving an average of 12.3 months of treatment in a holistic neurorehabilitation program. This may be due to a variety of factors, including location of injury, injury severity (31% of TBIs were severe and 66% were moderate to severe), the impact of participants’ mood, and degree of family participation. One factor that appears to be related to greater levels of self-awareness is the time between discharge and survey completion (p = 0.02). Cultivating and enhancing self–awareness may be a long-term process, suggesting the importance of long-term follow-up care to support the development of self-awareness following ABI. Factors related to resistance to self-awareness interventions need to be explored further. These findings indicate the need to design more effective interventions to address self-awareness in neurorehabilitation.
Increasing self-awareness following ABI may reduce risk taking behaviors and improve judgement, which consequently may decrease caregiver burden. This may enhance caregiver quality of life and thus reduce the economic burden on the family and society. Additionally, increasing self-awareness following ABI may increase the likelihood that a survivor will gain and maintain employment, (Kelley, et al., 2014 & Ownsworth, Desbois, Grant, Fleming, & Strong, 2006) resulting in less supervision and decreased financial assistance from family members and society. Medical costs, lost wages (survivor of TBI and caregiver), and public assistance following TBI often represent a significant cost to families and to society in general (Humpreys, Wood, Phillips, & Macey, 2013). Thus, interventions that improve and maintain self-awareness following ABI may reduce the financial burden of ABI on families and society.
Study limitations
Studies that use a discrepancy model between caregiver and participant-report to evaluate self-awareness rely on the belief that caregivers provide an accurate and objective report of participant level of functioning; however, this may not always be the case. It is possible that caregivers who are experiencing notable levels of caregiver burden are more likely to perceive their loved ones as more functionally impaired regardless of their true functional abilities. Without an objective measure of participants’ level of self-awareness, it is unclear how much caregiver perception may impact their ratings of ABI participant functioning and caregiver burden.
Attempts were made to contact all caregivers and survivors who had been discharged from the neurorehabilitation center; however, receiving the study invitation depended on accurate contact information. Among reachable potential participants, caregivers and survivors self-selected to join the study. It is possible that individuals with accurate contact information who consented to participate may have had a more positive experience with the neurorehabilitation program than those who were unreachable or those who refused to participate. Additionally, this study involves a relatively modest sample size, which impacts the ability to detect statistical differences.
This study was conducted following discharge from a holistic milieu-oriented neurorehabilitation program with an emphasis on caregiver support and survivor self-awareness. It is unclear if these findings generalize to a traditional post-acute neurorehabilitation setting.
Conclusions
Caregiver burden is significantly impacted by level of functioning and level of self-awareness of survivors of ABI. Survivors with impaired self-awareness not only lack insight into their functional abilities but tend to overestimate their capabilities, which likely contribute to the need for greater levels of supervision and thus increased caregiver burden. These findings indicate the need to continue investigating and implementing interventions to increase survivors’ level of self-awareness during neurorehabilitation programs.
It is unclear what factors may be related to increased levels of self-awareness; however, this study found that length of time following discharge from holistic neurorehabilitation was related to greater levels of self-awareness. This finding warrants further exploration.
Conflict of interest
This manuscript adheres in principle to the Conflict of Interest policy recommended by the ICMJE. No authors have any Conflict of Interest.
Aspects of this research were presented as a poster at the 16th Annual American Academy of Clinical Neuropsychology Conference on 06/21/2018 and as a poster at the 17th Annual American Academy of Clinical Neuropsychology Conference on 06/06/2019.
Funding
This work was supported by the Giles W. and Elise G. Mead Foundation for the Center for Transitional Neuro-Rehabilitation.