Introduction
Self-awareness can be defined as the ability to recognize deficits caused by a neurological injury or underlying brain pathology. This is one of the most complex impairments after an acquired brain injury (ABI) (Geytenbeek, Fleming, Doig, & Ownsworth, Reference Geytenbeek, Fleming, Doig and Ownsworth2017). Impaired self-awareness involves decreased understanding of the functional impact of impairments caused by the brain injury. Consequently, patients do not perceive the need and benefits of engaging in therapy and thus experience decreased motivation and poor acceptance of the use of compensatory strategies. Finally, this may lead to difficulties achieving and maintaining productive and independent living (Schmidt, Lannin, Fleming, & Ownsworth, Reference Schmidt, Lannin, Fleming and Ownsworth2011).
Over the last few years, a variety of intervention programmes using different techniques and methodologies have been developed, which aim to increase the level of self-awareness in patients with ABI, some of them showing positive effects (Leung & Liu, Reference Leung and Liu2011). Among them, some elements appear to be more effective in increasing self-awareness and optimizing everyday living outcomes, such as the use of metacognitive strategies, external feedback, group interaction and feedback, experiential participation and psychoeducation (Engel, Chui, Goverover, & Dawson, Reference Engel, Chui, Goverover and Dawson2017).
Nevertheless, the final goal of any rehabilitation programme is to improve the level of functionality and independence of patients with ABI in their daily living activities, i.e., their functional outcome. In addition to some evidence suggesting that improvements in self-awareness may produce significant gains in neuropsychological functioning (Rigon et al., Reference Rigon, Burro, Guariglia, Maini, Marin, Ciurli and Formisano2017), the connection between self-awareness improvements and functional outcome enhancements is still under debate (Ownsworth & Clare, Reference Ownsworth and Clare2006). Some randomized controlled trials and case series design studies have reported improvements on different measures of everyday living, using interventions with multiple therapeutic elements (Goverover, Johnston, Toglia, & Deluca, Reference Goverover, Johnston, Toglia and Deluca2007; Lundqvist, Linnros, Orlenius, & Samuelsson, Reference Lundqvist, Linnros, Orlenius and Samuelsson2010; Malec, Reference Malec2001; Noé et al., Reference Noé, Ferri, Caballero, Villodre, Sanchez and Chirivella2005). However, a limitation in almost all these studies is that they do not provide a clear description of the activities during the intervention sessions and that measures of functional outcome do not examine transfer and/or generalization to activities other than the ones in the rehabilitation process (Engel et al., Reference Engel, Chui, Goverover and Dawson2017). In a recent study by our group, we have demonstrated that implementing a structured intervention programme on self-awareness, developed from a biopsychosocial approach and relied on therapeutic strategies of proven effectiveness, is useful at improving self-awareness of patients who had suffered ABI (Schrijnemaekers, Smeets, Ponds, van Heugten, & Rasquin, Reference Schrijnemaekers, Smeets, Ponds, van Heugten and Rasquin2014; see Villalobos et al. (Reference Villalobos, Bilbao, Espejo and García-Pacios2018) for a detailed description of the intervention programme). However, in the present study, we examined whether improvements in self-awareness induced by the intervention programme are associated with an enhancement in functional outcome of those patients with ABI.
Measuring self-awareness is not straightforward and different methodologies have been employed, such as considering discrepancies between patient’s and a relative’s scores on a standardized questionnaire (e.g., the “Patient Competency Rating Scale”, Prigatano et al., Reference Prigatano, Fordyce, Zeiner, Roueche, Pepping and Wood1986). To avoid potential biases on scores based on discrepancies between the patient´s and collateral´s ratings (Richardson, McKay, & Ponsford, Reference Richardson, McKay and Ponsford2015), we used a self-awareness scale developed in a semi-structured interview format for our former study (Villalobos, Bilbao, Espejo, & García-Pacios, Reference Villalobos, Bilbao, Espejo and García-Pacios2018). According to previous studies that have raised the importance of separately assessing the awareness of the deficits and the awareness of the functional implications of such deficits (Giacino & Cicerone, Reference Giacino and Cicerone1998), this scale consisted of three main areas of assessment: Awareness of Injury, Awareness of Deficit and Awareness of Disability. In the Awareness of Injury dimension, the clinician assigned a score depending on whether the patient was able to acknowledge having suffered a brain injury or not, either spontaneously or in response to the clinician’s questions. In the Awareness of Deficit dimension, the scores depended on whether the patient spontaneously referred to suffering from different physical, sensory and cognitive deficits, required help or instances to recognize the same or ignored their deficits. Lastly, the Awareness of Disability dimension asked the patients about their ability to currently perform a series of activities (driving, cooking dinner or lunch, doing household chores, looking after a young child, working or studying and living alone); their score was based on whether their answers were in keeping with reality. The Awareness of Injury dimension ranges from 0 to 6 and both the Awareness of Deficit and the Awareness of Disability dimensions range from 0 to 12. Thus, the maximum score that a patient can obtain on the scale is 30, which indicates full awareness of having sustained a brain injury, its consequences and the disability it causes. Although the scale has not yet been formally validated, our previous study showed a high correlation with the scores provided by the “Self-Awareness of Deficits Interview (SADI)” (Fleming, Strong, & Ashton, Reference Fleming, Strong and Ashton1996). This agreement with a standardised and recognised instrument for the assessment of self-awareness suggests that the scale used in the study is able to provide a valid measure for self-awareness in a sample of patients with ABI (Villalobos et al., Reference Villalobos, Bilbao, Espejo and García-Pacios2018).
Finally, we used the Lawton Instrumental Activities of Daily Living Scale (Lawton IADL) to measure the functional changes in patients with respect to instrumental activities of daily living. The Lawton IADL (Lawton & Brody, Reference Lawton and Brody1969) was developed for measuring eight advanced activities of daily living: the ability to use the telephone, ability to shop, ability to prepare food, ability to do housekeeping, ability to do laundry, ability to use modes of transportation, responsibility for one’s own medications and ability to handle finances. A summary score ranging from 0 (low function, dependent) to 8 (high function, independent) was assigned. The validity of the Lawton IADL has been tested with the Physical Classification (Waldman & Fryman, Reference Waldman, Fryman, Shore and Leeds1964) Mental Status Questionnaire (Pteiffer, Reference Pteiffer1975), the Behaviour and Adjustment rating scales (Aumack, Reference Aumack1962), and the Physical Self-Maintenance Scale (Lawton & Brody, Reference Lawton and Brody1969). All of these scales measure functional status. Correlations between the Lawton IADL and the four other functional scales were significant at the 0.01 or 0.05 level. Inter-rater reliability of the Lawton IADL scale has been established at 0.85 (Lawton & Brody, Reference Lawton and Brody1969).
According to previous research linking self-awareness and functional outcome, we expect that patients undergoing the intervention programme will experience greater improvements in functional outcome when compared with those in the control group. Moreover, if improvements in self-awareness are related to functional outcome enhancements, a visible correlation between the degree of self-awareness improvement and the level of functional outcome enhancement is also expected.
Method
Design
Visual inspection of histograms created and the Kolmogorov-Smirnov test of normality for functional outcome scores revealed that neither pre-intervention nor post-intervention Lawton scores were normally distributed (p < 0.01 and p < 0.01, respectively). Thus, non-parametric statistics were used to assess the effectiveness of the self-awareness intervention programme to improve functional outcome. The improvement on functional outcome levels from pre-treatment to post-treatment intervention for each group of patients was first calculated, by subtracting the pre-treatment from the post-treatment Lawton scores. The level of improvement in both groups was then compared using the Mann–Whitney U test.
To analyse the relationship between the degree of self-awareness improvement (calculating it as the difference between post-treatment and pre-treatment scores in the self-awareness scale) and the improvement in functional outcome (calculating it as the difference between admission and discharge scores in the Lawton IADL), correlation analyses between both levels of improvements were performed in the group of patients who undertook the self-awareness intervention programme, as well as in the whole sample.
Participants
From an original sample of 60 patients, four participants did not complete the post treatment assessment. Thus, the final sample involved in the present study consists of 56 patients (39 men and 17 women) over 16 years of age (mean age: 38.64 years, standard deviation: 10.45, ranging from 18 to 57 years), on a residential basis in the National Centre for Brain Injury Treatment in Madrid, Spain. All patients had sustained a non-progressive ABI with an average time since onset of 140 days (standard deviation: 78.94) from the moment they suffered the injury to their admission to the centre, and 243.89 days (standard deviation: 81.97) from admission to discharge. All participants were medically stable, did not suffer any communicable diseases in an active phase and were able to actively participate in the rehabilitation process. The causes of ABI in the sample included: traumatic brain injury (n = 20), stroke (n = 27), brain tumour (n = 4) and other causes (n = 5).
Participants were randomly assigned to either the experimental or the control group (see Procedure section). Both groups were equivalent in age, time outside treatment before entering the centre, total rehabilitation time, pre-treatment functional outcome and pre-treatment self-awareness scores (see Materials section for a detailed description of the functional assessment scale; see Table 1).
Mean, Standard Deviations and T-Statistic for Independent Samples for Demographic Data and Scores on the Pre-treatment Self-awareness Scale
Procedure
The 56 participants in the study received a pre-treatment assessment, including self-awareness and functional outcome. They were then randomly assigned to the experimental and control groups by an administrative staff external to the study and blind to the assessment and rehabilitation processes. The experimental group (n = 28) received a self-awareness treatment programme, which consisted of eight sessions distributed over one month, at a rate of two sessions per week. This programme was designed in a group format including previously proven methodologies effective in improving self-awareness in the context of brain injuries (Schrijnemaekers et al., Reference Schrijnemaekers, Smeets, Ponds, van Heugten and Rasquin2014). Thus, the aspects of psychoeducation were included and work sessions on the patients’ own clinical tests’ data and their sessions based on verbal feedback as a therapeutic tool were incorporated, both provided by the therapist and the peer group. One single neuropsychologist (different from the one who carried out the assessment) conducted all treatment sessions to ensure a consistency in approach. Each patient was given a notebook where the different activities to be developed were listed, which was filled in during the sessions. It was intended to facilitate memory and transdisciplinary work (see Box 1 for detailed description of each session with their specific goals and activities). Patients in the control group (n = 28) attended eight equivalent sessions conducted by a clinician, during which they received rehabilitation sessions according to their therapeutic goals (e.g., memory, attention or social skills workshops), in which self-awareness was not specifically addressed. After the intervention period, patients from both groups undertook a post-treatment self-awareness and functional outcome assessment.
Results
Impact of the self-awareness intervention programme on patient’s daily living functionality
A major objective of the present study was to explore whether a structured rehabilitation of self-awareness deficits had a positive impact on a patient’s functional outcome, measured through the Lawton IADL. Results from the Mann–Whitney U test showed a significant difference in functional outcome improvements between groups (Z = −2.01, p = .04, Cohen’s d = 0.56), so that the experimental group exhibited higher functional outcome improvements than the control group during the post-treatment assessment (see Table 2). Cohen’s d values confirmed that the effect size of the difference was moderate (Cohen, Reference Cohen1988).
Mean and Standard Deviations for Pre-treatment, Post-treatment and Improvement for Experimental and Control Group
Correlation between self-awareness and daily living functionality improvements
The final objective was to confirm that rehabilitation induced improvements on self-awareness were related to the enhancement on patients’ functional outcome. Pearson’s r test in the group of patients who undertook the self-awareness intervention programme showed a moderate positive correlation (r = 0.35, p = 0.06), which tended to significance, suggesting a potential relationship in the way that patients with higher self-awareness improvement (after the intervention programme) exhibited a greater functional enhancement after the rehabilitation process (see Figure 1).
Scatter plot showing the correlation between self-awareness and functional outcome improvements in the experimental group.
In light of this result, we wondered whether the self-awareness level before the intervention programme might have influenced this relation. Although patients with very low self-awareness can potentially experience large improvements after the intervention programme, they might not raise an adequate post-treatment self-awareness level due to extremely low initial levels. It would thus be unlikely for such patients to experience a substantial enhancement in functional outcome. To test this hypothesis, a partial correlation analysis between self-awareness improvement and functional outcome enhancement was run, controlling the effect of pre-treatment self-awareness scores. Results from this analysis showed a significant positive correlation between the self-awareness improvement and functional outcome enhancement (r = 0.46, p = 0.01) when the effect of the pre-treatment self-awareness level was controlled.
Nevertheless, to further confirm that improvements in self-awareness are related to enhancements in functional outcome, we ran a correlation analysis between both levels of improvements in the whole group of patients, including those who did not undertake the self-awareness intervention programme. Results from this analysis revealed a moderate positive correlation (r = 0.34, p < 0.01) so that patients with higher self-awareness improvement experienced greater functional enhancements (see Figure 2).
Scatter plot showing the correlation between self-awareness and functional outcome improvements in the whole group.
Discussion
The results of the present study are promising and highlight the importance of considering specific intervention programmes in self-awareness, in the context of a broader rehabilitation process. Previous research had demonstrated that specifically tackling this cognitive deficit during rehabilitation is effective at improving self-awareness of patients who had suffered ABI (Lundqvist et al., Reference Lundqvist, Linnros, Orlenius and Samuelsson2010; Schrijnemaekers et al., Reference Schrijnemaekers, Smeets, Ponds, van Heugten and Rasquin2014; Villalobos et al., Reference Villalobos, Bilbao, Espejo and García-Pacios2018).
Although this result may be interesting in itself, the final goal of any ABI rehabilitation programme should be to improve the independence and functionality of patients in their daily living activities. Some studies have suggested that improvements in self-awareness produce significant gains in neuropsychological functioning (Rigon et al., Reference Rigon, Burro, Guariglia, Maini, Marin, Ciurli and Formisano2017), but whether self-awareness enhancement can lead to an improvement in daily living functionality is still inconclusive (Ownsworth & Clare, Reference Ownsworth and Clare2006). Results from the study show that patients who received a specific self-awareness rehabilitation programme raised higher levels of functionality than those who did not receive the same programme. More importantly, correlation analyses revealed a relation between the degree of self-awareness improvement and the size of the functional outcome enhancement. Thus, the patients who benefit most from the self-awareness intervention programme were also the ones who experienced greatest improvements in functionality and independence for instrumental activities of daily living (Goverover et al., Reference Goverover, Johnston, Toglia and Deluca2007; see also Cheng & Man, Reference Cheng and Man2006).
Notwithstanding, it is relevant to highlight that the relation between self-awareness improvement and functional outcome enhancement was reliable when the effect of pre-treatment self-awareness level was controlled. This specific result suggests that the initial level of self-awareness might be a boundary for achieving meaningful functional outcome enhancements through a specific intervention programme. It seems reasonable that patients with very low initial self-awareness, despite experiencing large improvements in this dimension (Villalobos et al., Reference Villalobos, Bilbao, Espejo and García-Pacios2018), were less likely to achieve a significant post-treatment self-awareness level to lead to a meaningful change in functionality. Still, the correlation analyses in the whole group, including those patients who did not undertake the self-awareness programme confirmed that improvements in self-awareness are associated with enhancements in functional outcome.
Despite the promising results of the present study, there is still room for improvement that should be taken into consideration for future research. The most current research focuses on the contribution of executive functions and episodic and working memory to raise awareness of cognitive ability after a traumatic brain injury, with promising results and important clinical implications. Self-awareness must be considered as a higher level aspect in the multidimensional executive function model, in an effortful conjunction of executive processes in parallel with lexical-semantic memory access (Ylikoski & Hnninen, Reference Ylikoski and Hnninen2003; Zimmermann, Mograbi, Hermes-Pereira, Fonseca, & Prigatano, Reference Zimmermann, Mograbi, Hermes-Pereira, Fonseca and Prigatano2017). Similarly, it is necessary to consider metacognition as an important function involved in the relation between self-awareness and the general high level cognitive functions (Doig, Fleming, Ownsworth, & Fletcher, Reference Doig, Fleming, Ownsworth and Fletcher2017). Clarifying the specific cognitive abilities associated with self-awareness and how they interact with each other will have imperative clinical implications contributing to guiding and developing more effective assessment approaches and interventions (Zimmermann et al., Reference Zimmermann, Mograbi, Hermes-Pereira, Fonseca and Prigatano2017).
In conclusion, this study provides new and clinically relevant evidence regarding the benefits of considering specific programmes for rehabilitation of self-awareness, as a part of the global cognitive rehabilitation process of patients with ABI. Implementing structured and proven self-awareness interventions not only improves the patients’ self-awareness, but also lead to meaningful gains on their daily living functionality, which is considered a major goal of cognitive rehabilitation.
Supplementary materials
For supplementary material for this article, please visit https://doi.org/10.1017/BrImp.2019.10.
Author ORCIDs
Dolores Villalobos, 0000-0003-2434-6260; Javier Pacios, 0000-0003-0006-6184.
Required Statements
Financial support
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Conflicts of interest
Dolores Villalobos has no conflict of interest to disclose. Álvaro Bilbao has no conflict of interest to disclose. Francisco López-Muñoz has no conflict of interest to disclose. Javier Pacios has no conflict of interest to disclose.
Ethical standards
The authors assert that all procedures contributing to this work comply with the ethical standards of relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
