In search of the ‘self’: Holistic rehabilitation in restoring cognition and recovering the ‘self’ following traumatic brain injury: A case report

Abstract

BACKGROUND:

Following mild-moderate traumatic brain injury (TBI), an individual experiences a range of emotional changes. It is often difficult for the patient to reconcile with their post-injury persona, and the memory of pre-injury personhood is particularly painful. Insight into one’s cognitive deficits subsequent to injury can lead to an existential crisis and a sense of loss, including loss of self.

OBJECTIVE:

Restoration of cognitive functions and reconciliation with loss of pre-traumatic personhood employing a holistic method of neuropsychological rehabilitation in a patient suffering from TBI.

METHODS:

Ms. K.S, a 25-year-old female, presented with emotional disturbances following TBI. She reported both retrograde and anterograde amnesia. A multidimensional holistic rehabilitation was planned. Treatment addressed cognitive deficits through the basic functions approach. Cognitive behavioural methods for emotional regulation like diary writing helped reduce irritability and anger outbursts. Use of social media created new modes of memory activation and interactions. Compensatory strategies were used to recover lost skills, music-based attention training helped foster an individualised approach to the sense of one’s body and self.

RESULTS:

As a result of these differing strategies, changes were reflected in neuro-psychological tests, depression score and the patient’s self-evaluation. This helped generate a coherent self-narrative.

CONCLUSION:

Treatment challenges in such cases are increased due to patient’s actual deficits caused by neuronal/biochemical changes. Innovative and multi-pronged rehabilitation strategies which involve everyday activities provided an answer to some of these problems. This method of rehabilitation may provide an optimistic context for future research.

Keywords

Traumatic brain injury cognitive rehabilitation holistic rehabilitation music-based intervention autobiographical memories selfhood

1 Introduction

Alterations in mood, behaviour and changes in per-sonality are often a concomitant of traumatic brain injury (TBI) (Garcia, Mielke, Rosenberg, Bergey, & Rao, 2011). There is in fact a threefold increased prevalence of changes in personality post-TBI. Current literature argues against a specific TBI personality syndrome and instead highlights the diversity of personality changes that reflect persistent challenges and compensatory coping strategies developed by patients, post TBI. (Hibbard et al., 2000). Personality changes can be in terms of exaggeration of existing personality traits or development of altogether new traits (Tate, 2003). Although the changes in personality can be varied some common personality changes that have been often reported include impulsivity, irritability, affective instability and apathy (Warriner & Velikonja, 2006).

These changes are understood by the patients and cause considerable incongruity in them about their personhood. This loss of sense of self, commonly reported by survivors of TBI, is described as ‘the sine qua non of brain injury’ (Beadle, Ownsworth, Fleming, & Shum, 2016; Medved & Brockmeier, 2008). The ‘sense of self’ is described as the mental processes that provide one with feelings of singularity, coherence, individuality and unity that defines one as an unique and particular human being. Loss of personhood or self-identity is also an expression of a variety of cognitive, psychological and social sequelae of TBI (Carroll & Coetzer, 2011; Thomas, Levack, & Taylor, 2014). Addressing this ‘loss of sense of self’ which is disrupted by insult to the brain (Damasio, 2003), is an important issue in rehabilitation of TBI survivors (Folzer, 2001; Miller, 1993; Nochi, 1998b).

Focusing on emotional and behavioural self-concept, people with severe TBI rated their present self as vastly different from past (pre-injury) self and they perceived themselves as more bitter, dependent, frustrated and irritable and of less worth. Such negative self-discrepancies have also been reported following mild TBI and were found to be related to greater psychological distress. While people with mild TBI predicted at six months post-injury that they would return to their pre-morbid selves one year later, negative self-discrepancies persisted at the three year follow-up (Wright & Telford, 1996). Clearly, these discrepancies create challenges in forming a coherent sense of self following injury.

Studies have also focussed on the process of interoception as the main foundation of continuity in an individual’s sense of personhood (Dunn, Dalgleish, & Lawrence, 2006; Panksepp, 1999). The brainstem, basal forebrain, paralimbic cortices and parietal cortical structures are primarily implicated and this personhood is understood by a “felt” sense of background emotion (Damasio, 1999) and subjective continuity. Damage to this area may be responsible for patient’s reporting feelings of ‘just feeling different’. The biopsychosocial framework of personality change following head injury views personality change as a consequence of a range of direct and indirect factors that may influence the judgement or felt sense of change in personhood by the individual and significant others as a result of neurological and neuropsychological deficits, psychological mechanisms and psychosocial processes (Yeates, Gracey, & McGrath, 2008). For the ‘examined self,’ to feel healthy again, assistance is required, “in regaining individual personality components so the person can accept voluntarily the limitations the brain injury imposes,” this may also, “assist the individual to value their rehabilitation achievements and view their present life as meaningful” (Ben-Yishay & Daniels-Zide, 2000).

1.1 Aim and objectives

We present a case report of a patient who suffered TBI with cognitive deficits who also experienced a loss of ‘personhood’ or self. We provide details of the holistic rehabilitation plan and the process. Through this case report we aim to underscore the importance of addressing multiple aspects of an individual’s functioning along with cognitive functioning in order to help restoration of the ‘sense of self,’ while carrying out neuropsychological rehabilitation.

2 The case

Ms. K.S, a 25-year-old female, with an MTech in Computer Science, met with a road traffic accident 2-years ago. From a middle socioeconomic background, she lives in a joint family in an urban area. The patient was initially brought to the emergency neurosurgery unit at the institute and was treated with conservative management. Six months later, reported back with complaints of headache, cognitive failures and other behavioural symptoms such as irritability, anger outbursts and mood dysregulation. Patient was subsequently referred to adult psychiatry and clinical neuropsychology units for further evaluation and intervention. Her C.T scan showed focal hypodense lesion in left lentiform nucleus and right basal ganglia calcification.

The patient was referred for a detailed neuropsychological evaluation and psychological interven-tion for observed cognitive deficits and personality changes. Family members reported significant changes in her personality in terms of increased irritability, anger outbursts, stubbornness and rigidity. Both patient and family reported patient’s low mood, suicidal ideations, sleep disturbances. However, what was most disturbing for the patient herself was an inability to experience her sense of ‘self’. She was unable to relate to how others understood her. Patient reported, that her family members and relatives remembered her as a fun loving extrovert and as someone who was good at extra-curricular activities. However, post TBI, K.S. found it extremely difficult to relate to this description of herself provided by others. She found herself uncomfortable in social situations, not able to engage in conversations and unable to remember anything from her academic curriculum (MTech in Computer Science). She was unable to recollect personal episodic or autobiographical memories. She could not recall faces of distant relatives and friends and could not recall certain significant incidents, such as her brother’s wedding a year ago. She also found it difficult to remember and learn new information. K.S. found that she could not participate in social interactions with her family and friends as she was unable to comprehend humour, she found it difficult to understand sarcasm, pun, metaphor or analogy. She also felt that conversations in groups progressed so fast that she was unable to keep up or contribute. Before the injury K.S’s enjoyed dancing and singing, however, in her current state she found herself unable to follow rhythms and tunes and could not imagine any choreography which earlier came to her ‘naturally’.

In her own words, K.S often reported how ‘she is not the same following the injury’. She felt a disconnect between her past self (as narrated by family and others) and her present self. She felt disassociated from her contemporary social environment. When asked about what she expected from the treatment she said ‘to search for her ‘self’.

3 Method

3.1 Assessments

A comprehensive neuropsychological evaluation and evaluation of mood was carried out using tests from the NIMHANS neuropsychological battery (Rao, Subbakrishna, & Gopukumar, 2004) and Beck’s Depression Inventory (Beck, Steer, & Brown, 1996). Visual analogue scale was used to assess other significant domains of functioning, that needed to be addressed during cognitive rehabilitation sessions. Written informed consent was taken from patient regarding the use of treatment details for research and publication purposes.

The scores on the neuropsychological tests were compared with Indian norms appropriate to that of the subject’s gender, age and education (Rao et al., 2004). The 15th percentile score (1 SD below the mean) was taken as the cut off score (Heaton et al., 1995). K.S’s performance was in the deficits range on working memory and response inhibition. However she also had low average scores on sustained attention and verbal and visual learning and memory.

3.2 The intervention

K.S’s loss of sense of self seemed to have strong roots in her difficulties recollecting autobiographical memories and loss of certain skill sets such as educational and professional skills, recreational skills (dance, music), and interpersonal skills. She would often mention in sessions that she was always “the cheerful and bubbly type” and now she is always “grumpy and confused”. It was difficult to ascertain initially, whether her understanding of past self was from what others told her or from semantic self-knowledge ‘tags’. The therapist also found that the stigma around this ‘self’ was persistent, and experienced as actual and real. It was important that therapy address both these issues.

Therapy sessions required developing cognitive skills to dispel the inability to process and manage social interactions. Simultaneously, a coherent and confident social narrative about the past had to be retrieved for the recovery of the ‘real’ self.

A holistic approach to neuropsychological intervention was taken to address cognitive functions, mood, interpersonal and social domains; all of these worked towards addressing the loss of a sense of self and meaning. A multi-method approach was taken to target major concerns.

Cognitive remediation (CR) using paper-pencil and computer based tasks.

CR via Neurologic Music Therapy [Techniques of NMT, such as the Associative Mood and Memory Training (AMMT), Music Psychosocial training and Counselling (MPC)] were also used. In addition, listening to music and dance choreography was used as a technique to help target memory and autobiographical memory deficits.

Use of social media for memory training.

Individual and family therapy sessions to address interpersonal factors.

CR consists of a set of procedures that promote recovery of cognitive functions (Prigatano, 2013). The aim is to promote deficient cognitive functions and restore them as close as possible to pre-morbid levels of functioning. Most programs provide treatments to improve cognitive skills and practical skills.

The results from neuropsychological assessments, symptom profile and interview were used to structure an overview of the deficits in various aspects of cognition and emotions. The areas that need intervention were noted, after which a hierarchy was built on the basis of progressive targeting of functions. The functions which have a pervasive effect on other domains were targeted first for example, attention deficits (focused, sustained, divided). In each domain a set of tasks were constructed with an increasing level of difficulty. The patient was made to practice these tasks. The level was increased in difficulty when the patient showed a plateau in performance on the previous levels. The details of the intervention are provided in Table 1.

Table 1
Target areas identified and the process of retraining them

Theory Target function Task

Cognitive retraining Interventions in retraining include paper–pencil and computer-based tasks that allow training of the cognitive function as well as of metacognition (i.e., self-monitoring and self-regulation) to assist compensatory strategies and to further benefits to real-world conditions (Hegde, 2014; Kelkar, 2014). Sustained attention, working memory Letter cancellation task was initiated with two letters and spaced out, large font format. As her time and errors improved the task difficulty was increased by reducing the font and adding more letters to remember.

Attention was targeted through music, by tapping along with music to give rhythmic beats (personalised by using her previously favourite songs). The tasks difficulty was increased by increasing the complexity of the beats in the music.

Retraining involves directly training the specific cognitive function that is effected through cognitive drills (van Heugten, Wolters Gregório, &Wade, 2012). Frequent practice on carefully designed exercises is found to aid recovery of the impaired neural circuits and restitution of functions such as attention, memory, executive functions, etc. Visual and verbal learning and memory Verbal memory was targeted by giving her one paragraph to remember for a song which she previously liked but had forgotten the lyrics and beats to. We slowly increased the number of paragraphs to be remembered for each song, which she had to sing along with an online karaoke.

The tasks mediated by these circuits would hence lead to a near normal or normal level of functioning as compared to the functioning due to a brain without any damage (Mateer, 1999). Response inhibition Tapping to externally cued rhythmic beats. Patient reported that listening to music also calmed her down and when she had fits of anger she would often to the tapping exercise with the rhythms, this exercise hence had a twofold effect.

As KS was interested in dance and choreography pre-injury. The tasks was to come up with different dance moves for certain beats. This exercise was difficult for her and hence was initiated in the middle phase. She slowly picked up small movements. And later also joined a dance class to further her interest.

Reminiscence therapy Reminiscence involves individuals discussing memories and experiences from their remembered past. With the aid of memory-jogging materials such as photographs, music and newspapers (Jenkins &Stranaghan, 2010). Reminiscence has been widely used with older adults who have significant memory impairments and adapted to be used with brain injury patients (Jenkins &Stranaghan, 2010; Judd &Wilson, 1999; Wilson, Mottram, &Vassilas, 2008). Autobiographical memory K.S’s Facebook profile was used as source of retraining material in the initial sessions. The therapist would sit with her and go through the friend list, asking her to recognise any of the added people and talk about some memories with that person. In the initial sessions she was able to recognise only two of her close friends and her brother. However, as the intervention progressed she was able to recognise and sometimes provide episodic, semantic and autobiographical memories associate with each one of them. She also, as a by-product of this activity made efforts to contact some of these friends who she had lost touch with.

Social cognition and skill training ‘Targeted interventions’ (Peyroux &Franck, 2014) approach involve training specific components. Of social cognition, such as understanding emotional recognition, understanding intentions, response selection, theory of mind deficits (McDonald, 2013; Muller et al., 2010). Social cognitions KS’s constant complaint was that she was known to be a ‘social’ person pre-injury and an ease in conversations with anyone. It greatly disturbed her that now she was unable to relate even to her close friends and they all clearly felt the ‘difference’ just as she did. Recognising situations where she was unable to respond correctly and promptly in social scenarios and she did not understand subtleties in these conversations, such as sarcasm and humour.

Using snippets of her conversations and together brain stormed on what could be the reasons her communication failures and some alternate ways in which she could have responded. This did seem to help her in getting a better insight to her social behaviours.

A more ‘Global” approach would involve including all aspects into training (defining emotions, emotion mimicry training), figuring out situations (distinguishing facts from guesses, jumping to conclusions, and understanding bad events), and integration (checking out guesses in real life). Its efficacy is studied mostly in schizophrenia, however can be adapted for TBI. Deficits in social cognitions not only seemed to affect the functionality but also her self-esteem and quality of life. She constantly felt that she was unable to understand the conversations in entirety, however she could not point out the exact nature of these miscommunications.

Cognitive behavioural therapy for TBI Neurobehavioural paradigm (Rodger Llewellyn Wood, 1987; Rodger Ll Wood &Worthington, 2017) to rehabilitation which has components of behaviour therapy, neuropsychology, and behavioural neurology. It addresses cognitive, emotional, and physical sequelae of brain injury. Behavioural disturbances In our current case it was found that there were discords in the family at multiple levels, since this was a ‘joint family’, many non-immediate family members lived together. Here, there are large expectations of code of conduct in the family. K.S felt that none of the members understood her illness and everyone wanted to quickly get her married, as if to ward of responsibility. Family was called for psychoeducation regarding the injury and deficits and also regarding the effect it has on family as a system. Individual sessions were scheduled with the mother as it was found that she was suffering from caregiver burden, since most of patient’s anger and irritability was expressed on to her.

Modifications to CBT (Gallagher, McLeod, &McMillan, 2019) to suit needs of TBI (e.g., addition of information about common changes in capacities post-injury) or alterations in therapeutic technique (e.g., mass repetition of key information). 5 categories of medication include: therapeutic education and formulation specific to brain injury; attention, concentration and alertness; communication; memory; and executive functioning. Mother was also involved in the cognitive tasks and session homework at home (CBT and CR) such as scheduling pleasure and mastery tasks, involving in a cognitively demanding activity such as cooking a novel dish.

Family therapy for TBI Behavioural family therapy approaches (Oddy &Herbert, 2003) have also been modified for TBI. Problem-solving techniques focuses on outcomes, rather than processes, the members take a greater role in the development of selected interventions and can measure their progress more concretely by the progress they make on each issue. Home based rehabilitation (Pace, 1999) the treating team provides training for family members and along with the patient. Family member observes sessions and carry out therapists’ recommended tasks for programmes and activities at home. This also increases understanding of patient deficits and recovery process as well as improves ecological validity of the tasks. Family adjustment Pre-injury factors (reported to play a major role in adjustment and recovery after TBI) (Dikmen, Bombardier, Machamer, Fann, &Temkin, 2004). Since childhood she felt that she and her brother shared the same ‘fate’ and felt very close to him, the rupture in her ‘self’ was also a mirror to her for the rupture in her relationship with him. K.S had some differences with her brother’s wife and she felt that her communication with her brother had suffered since his marriage. She was however able to work through these feelings in the sessions and through setting up activities which could help her keep her connection with him.

Theory	Target function	Task
Cognitive retraining Interventions in retraining include paper–pencil and computer-based tasks that allow training of the cognitive function as well as of metacognition (i.e., self-monitoring and self-regulation) to assist compensatory strategies and to further benefits to real-world conditions (Hegde, 2014; Kelkar, 2014).	Sustained attention, working memory	Letter cancellation task was initiated with two letters and spaced out, large font format. As her time and errors improved the task difficulty was increased by reducing the font and adding more letters to remember.
Attention was targeted through music, by tapping along with music to give rhythmic beats (personalised by using her previously favourite songs). The tasks difficulty was increased by increasing the complexity of the beats in the music.
Retraining involves directly training the specific cognitive function that is effected through cognitive drills (van Heugten, Wolters Gregório, &Wade, 2012). Frequent practice on carefully designed exercises is found to aid recovery of the impaired neural circuits and restitution of functions such as attention, memory, executive functions, etc.	Visual and verbal learning and memory	Verbal memory was targeted by giving her one paragraph to remember for a song which she previously liked but had forgotten the lyrics and beats to. We slowly increased the number of paragraphs to be remembered for each song, which she had to sing along with an online karaoke.
The tasks mediated by these circuits would hence lead to a near normal or normal level of functioning as compared to the functioning due to a brain without any damage (Mateer, 1999).	Response inhibition	Tapping to externally cued rhythmic beats. Patient reported that listening to music also calmed her down and when she had fits of anger she would often to the tapping exercise with the rhythms, this exercise hence had a twofold effect.
		As KS was interested in dance and choreography pre-injury. The tasks was to come up with different dance moves for certain beats. This exercise was difficult for her and hence was initiated in the middle phase. She slowly picked up small movements. And later also joined a dance class to further her interest.
Reminiscence therapy Reminiscence involves individuals discussing memories and experiences from their remembered past. With the aid of memory-jogging materials such as photographs, music and newspapers (Jenkins &Stranaghan, 2010). Reminiscence has been widely used with older adults who have significant memory impairments and adapted to be used with brain injury patients (Jenkins &Stranaghan, 2010; Judd &Wilson, 1999; Wilson, Mottram, &Vassilas, 2008).	Autobiographical memory	K.S’s Facebook profile was used as source of retraining material in the initial sessions. The therapist would sit with her and go through the friend list, asking her to recognise any of the added people and talk about some memories with that person. In the initial sessions she was able to recognise only two of her close friends and her brother. However, as the intervention progressed she was able to recognise and sometimes provide episodic, semantic and autobiographical memories associate with each one of them. She also, as a by-product of this activity made efforts to contact some of these friends who she had lost touch with.
Social cognition and skill training ‘Targeted interventions’ (Peyroux &Franck, 2014) approach involve training specific components. Of social cognition, such as understanding emotional recognition, understanding intentions, response selection, theory of mind deficits (McDonald, 2013; Muller et al., 2010).	Social cognitions KS’s constant complaint was that she was known to be a ‘social’ person pre-injury and an ease in conversations with anyone. It greatly disturbed her that now she was unable to relate even to her close friends and they all clearly felt the ‘difference’ just as she did.	Recognising situations where she was unable to respond correctly and promptly in social scenarios and she did not understand subtleties in these conversations, such as sarcasm and humour.
		Using snippets of her conversations and together brain stormed on what could be the reasons her communication failures and some alternate ways in which she could have responded. This did seem to help her in getting a better insight to her social behaviours.
A more ‘Global” approach would involve including all aspects into training (defining emotions, emotion mimicry training), figuring out situations (distinguishing facts from guesses, jumping to conclusions, and understanding bad events), and integration (checking out guesses in real life). Its efficacy is studied mostly in schizophrenia, however can be adapted for TBI.	Deficits in social cognitions not only seemed to affect the functionality but also her self-esteem and quality of life. She constantly felt that she was unable to understand the conversations in entirety, however she could not point out the exact nature of these miscommunications.
Cognitive behavioural therapy for TBI Neurobehavioural paradigm (Rodger Llewellyn Wood, 1987; Rodger Ll Wood &Worthington, 2017) to rehabilitation which has components of behaviour therapy, neuropsychology, and behavioural neurology. It addresses cognitive, emotional, and physical sequelae of brain injury.	Behavioural disturbances In our current case it was found that there were discords in the family at multiple levels, since this was a ‘joint family’, many non-immediate family members lived together. Here, there are large expectations of code of conduct in the family. K.S felt that none of the members understood her illness and everyone wanted to quickly get her married, as if to ward of responsibility.	Family was called for psychoeducation regarding the injury and deficits and also regarding the effect it has on family as a system. Individual sessions were scheduled with the mother as it was found that she was suffering from caregiver burden, since most of patient’s anger and irritability was expressed on to her.
Modifications to CBT (Gallagher, McLeod, &McMillan, 2019) to suit needs of TBI (e.g., addition of information about common changes in capacities post-injury) or alterations in therapeutic technique (e.g., mass repetition of key information). 5 categories of medication include: therapeutic education and formulation specific to brain injury; attention, concentration and alertness; communication; memory; and executive functioning.		Mother was also involved in the cognitive tasks and session homework at home (CBT and CR) such as scheduling pleasure and mastery tasks, involving in a cognitively demanding activity such as cooking a novel dish.
Family therapy for TBI Behavioural family therapy approaches (Oddy &Herbert, 2003) have also been modified for TBI. Problem-solving techniques focuses on outcomes, rather than processes, the members take a greater role in the development of selected interventions and can measure their progress more concretely by the progress they make on each issue. Home based rehabilitation (Pace, 1999) the treating team provides training for family members and along with the patient. Family member observes sessions and carry out therapists’ recommended tasks for programmes and activities at home. This also increases understanding of patient deficits and recovery process as well as improves ecological validity of the tasks.	Family adjustment Pre-injury factors (reported to play a major role in adjustment and recovery after TBI) (Dikmen, Bombardier, Machamer, Fann, &Temkin, 2004). Since childhood she felt that she and her brother shared the same ‘fate’ and felt very close to him, the rupture in her ‘self’ was also a mirror to her for the rupture in her relationship with him.	K.S had some differences with her brother’s wife and she felt that her communication with her brother had suffered since his marriage. She was however able to work through these feelings in the sessions and through setting up activities which could help her keep her connection with him.

4 Results

The patient showed significant improvements in her percentile on the neurocognitive assessments of mental speed, sustained attention, verbal fluency, verbal working memory, planning, set shifting, response inhibition and verbal and visual learning and memory. She also showed significant positive changes on somatic and cognitive-affective domains of Beck’s Depression Inventory. Generalisation of the functions in day to day activities helps us to appreciate the changes over and above normal variability of functions with time. This was found, in her self-evaluation, measured through a visual analogue scale. She reported significant improvements in anger and mood regulation, sleep disturbance, negative recurrent thoughts, retrograde memory and ‘self’.

On the neuropsychological tests, there was an improvement in performance on all domains. On VAS, improvement was shown in all aspects, though some difficulty still remained in the domain of ‘negative thoughts’. The main area of concern related to the patient’s future and to questions about adaptation to the changed scenario. She was anxious, because she found it difficult to recall most things learnt in her MS degree, and had a gap in her curriculum vitae (because of the accident). However, she was certain that she wanted to work, because that would help her build an identity and give her an opportunity to implement and improve on the progress made in the sessions. She felt, that she recollected most factual details of her past, of the people in her life, and of her choices. She was able to focus, read, remember her favourite songs and cook her favourite dishes. She was able to meet friends in small groups, went for long walks with her parents, and spent evenings with her extended family chatting and playing games. Though she found some gaps in relating to the ‘old self’, an understanding of the ‘new’ self was emerging.

Though KS did not go back to her full time gainful technical job, she used her knowledge skills to work on her personal website to help in the family business. She continues to adjust to her new identity and integrate parts of lost self. Follow up sessions are held once a month, where her progress is discussed. Sessions also focus on problem solving in personal, interpersonal and cognitive domains.

5 Discussion

This study highlights the importance of an integrative and a holistic approach in neuropsychological rehabilitation of cases with TBI where primary concern of the patient is a disrupted “sense of self”. There has recently been much discussion in the academic sphere on needs and challenges of ‘Holistic Rehabilitation’. However, there is little consensus on the model. Whereas, the traditional definition of holistic rehabilitation focusses on impairment and ability alone or activity or social participant alone, recent research considers holistic neuropsychological rehabilitation as creation of a ‘meaningful and satisfactory life’, even with the limitations imposed by the injury (Cicerone et al., 2008). There has been a significant need to understand and shift the need to ‘identity’ in such a definition (Coetzer, 2008), such that it involves patient’s understanding of ‘experience of self in the world’. Prigatano (2013) describes such a rehabilitation as one with focus on establishment of a therapeutic environment, work with families, psychotherapy with specific focus on therapeutic alliance and working on cognitive abilities. Holistic approach incorporates the milieu model and requires assessments and results to be meaningful for the patient. In this context value of randomised control trials over observational approach have been understood to be overestimated. Such a holistic approach is individualised and focussed on aims, needs, resources and deficits of the patient (Oberholzer & Müri, 2019). The current intervention adopts this form of holistic approach.

Fig. 1

Neuropsychological functions pre- and post-intervention.

Fig. 2

VAS scores pre- and post-intervention.

An individual’s ‘self’ is expressed in many dom-ains, therefore, concerns around personality, emotion and cognition all have to be addressed with in rehabilitation, in an integrated manner. The therapist can segregate these domains but the self can be addressed only by their combination. It is generally accepted, that in milder forms of injury, the insight of deficit is more intense and produces a higher level of depression and anxiety, than more severe forms of injury. On the other hand, severe TBI presents with lesser appreciation of deficits or anosognosia and with lesser emotional dysfunctions (Fleminger, Oliver, Williams, & Evans, 2003; Sawchyn, Mateer, & Suffield, 2005). Given this understanding, it is assumed that cognitive behavioural work would be required with the former and neurocognitive/compensatory work with the latter (Mateer, Sira, & O’connell, 2005). However, in this case, we found it possible to work on all domains together and improvements in one affected the other.

Fig. 3

BDI scores pre- and post-intervention.

An important understanding that emerges from this case is the problematic of ‘changes’ in the ‘self’, specifically, the continuity and unity of the self. It brings us to some critical questions that neuropsychologists ask about the self- what does the ‘self’ comprise of? Is it autobiographical memories/semantic memories or episodic memories? Is it how others see us or is it how we respond to others? Is it our emotional responses to situations or cognitive decisions that we take?

Clearly, memory of our personal and public past or autobiographical memory is a core component of our concept of self- of who we are. Our store of past experiences helps guide our current behaviour, resulting in consistency of response and behavioural traits that constitute our personality. Loss of self has been described in terms of three different categories (Nochi, 1998): loss of clear self-knowledge, loss by comparison (to earlier self and others), loss in eyes of others. Prebble, Addis, & Tippett (2013) in an article on autobiographical memory and self, describe two phenomenon important for the self, one is the conscious phenomenological experience of selfhood the ‘Subjective sense’ (Leary & Tangney, 2012) and second the mental representation of the self, that is, things that we know about the self. This differentiation becomes important in the case we describe as the former is lacking even when the latter is present. This subjective sense of self relates to past, present and future of the self. It is particularly related to the past in terms of episodic memories that constitute the first person experience of self/self-experience. These contrast with the sematic-noetic aspects of one’s life which exist without recollection of the experience of self. This clearly relates to Tulving & Murray’s (1985) remembering/knowing paradigm, when K.S describes ‘knowing’ aspects of herself (studious, outgoing, dancer etc.) but not ‘remembering’ aspects of herself.

Another line of study describes five aspects of self: ecological, interpersonal, extended (memory and anticipation), private and conceptual (network of socially based assumptions of theories about human nature). Some theories of self, highlight the importance of others in creating the self, such as the self-categorization theory (Turner & Reynolds, 2011) and the social comparison theory (Festinger, 1954). In both theories, the self is fluid and variable and requires flexibility and the self is also generated through shared representations. In KS this flexibility was reduced, as she found it difficult to cope with the changes within her frame of reference (because of loss of memory) and to maintain her own private sense of selfhood, amongst many ‘other’ representations of herself. Theories of identity accommodation and assimilation also emphasize sufficient self-flexibility for a better identity adjustment with new experiences (Whitbourne, Sneed, & Skultety, 2002). Therefore, for KS living in a fossilised self was also disruptive and flexibility training helped extend her scope in terms of its use in emotional self-understanding.

In recent neuroimaging data the self-other processing involves right hemisphere (Decety & Sommer-ville, 2003), that is selective activation of right inferior frontal gyrus when task involved self faces, right cingulate and prefrontal regions in autobiographical memory and trait evaluation (Keenan et al., 2001). KS’s right frontal injury may also have produced an absence of memories, it probably contributed to an intense experience of deficit. Self-coherence binds current working self to remembered reality and supports the generation of different images of self in past and self in future (Markus & Nurius, 1986). For KS it was difficult to have images of either. The conceptual self in Self Memory Systems (Conway & Pleydell-Pearce, 2000) theory is a combination of autobiographical and episodic self. The model specifically highlights the importance of Self Defining Memories (SDMs), which also contribute to regulation of mood (Singer & Salovey, 1996). It has been found that non-depressed individuals use positive memories to repair negative moods and depressed individual are less likely to recall SDMs when asked to recall positive memories. KS’s lack of autobiographical memories reduced capacity to repair mood through better memories. Since deficit in behavioural regulation, furthers inappropriate self-conscious emotions and also reduces ability to interpret self-conscious emotions of others. It then reinforces maladaptive behaviours (Beer, Heerey, Keltner, Scabini, & Knight, 2003). Therefore, for KS, the use of reminiscence in therapy along with ToM and social skills development contributed to building a better emotional regulation base. KS reported that she found it calming to do music related exercises and that it also helped her with issues of anger and irritability.

Fig. 4

Multiple cognitive areas contributing to sense of ‘self’.

The greatest contribution to the prediction of global life satisfaction maybe made by a person’s perceived self-efficacy, particularly, perceived self-efficacy for the management of cognitive symptoms. Perceived cognitive self-efficacy also mediates the relation between community integration and global life satisfaction (Cicerone & Azulay, 2007).

The cognitive rehabilitation program, thus, provided opportunities for involving K.S in cognitive tasks in a controlled setting and for understanding how to manipulate the environment to succeed in those tasks. This, in turn, helped her to gain a sense of self-efficacy and self-mastery in dealing with outcomes of her performance on these tasks. This aspect of cognitive retraining maybe important for improved functioning in most individuals (Cicerone et al., 2008).

Use of basic function approach, initially, helped improve her attention and working memory. This improvement facilitated working, learning and memory functions. Along with the general memory tasks, autobiographical and episodic memories were also introduced to improve her subjective sense of self. These had a large impact on her mood, which improved concurrently with better cognitions and skills. These skills were further used in improving her basic functions and adjustment at home (cooking, household chores) and in social settings (remembering incidents, songs, language functions, social skills). These adjustments gave rise to better self-esteem and contributed to an improved sense of ‘self’. We used social media to gain information about KS’s world and to add to her understanding of self. Social media can be a huge resource in such rehabilitation as it helps connect past and present, stores memories, memories of friends through posts, photographs, videos etc. Although there have been attempts to understand the use of social media by and with people with TBI (Brunner, Hemsley, Palmer, Dann, & Togher, 2015), it is only recently that literature has come up with evidence of its usefulness (Brunner, Hemsley, Togher, & Palmer, 2017).

Families are an important source of strength or limitation in a rehabilitation program; this is especially true in the case of TBI rehabilitation. Head injury changes the person’s characteristics to a large extent and this change in one family member has a ripple impact on other members. This has been the focus of extensive research (Duff, 2005; Wood, Liossi, & Wood, 2005) and post-injury consequences such as stress, depression, anxiety and reduced quality of life are the focus of discussion (Blake, 2008; Schönberger, Ponsford, Olver, & Ponsford, 2010).

Since the collaboration of significant others is necessary in social identity reconstruction, (Nochi, 2000) we found that involving the family was a very crucial step for furthering and maintaining gains in all domains. The inclusion of the family was also important for the work on social cognition and the eventual journey to creating a comprehensive sense of self.

Overall, K.S. was able to achieve some sense of the self. However self-continuity is often achieved in the course of re-connecting with one’s values, activities (e.g., hobbies), and social networks and roles (e.g., as a parent) which takes time to develop post TBI. In such cases, confronted with various functional impairments and activity limitations (e.g., inability to drive or go to work), redefining self-identity also entails coming to terms with an altered lifestyle and change in future goals (Klonoff, 2010; Ownsworth, 2014). Over time, positively redefining ‘self’ may involve forming new priorities and interests post TBI. This will eventually restore self-esteem and enhance satisfaction with life (Haslam et al., 2008).

6 Limitations

A primary limitation is that this is a single case study and hence generalisation of these results through such multimodal approach is difficult. Many techniques were tailor made to address the patient’s personal, psycho-social milieu, hence translating such a work to a larger cohort would be challenging. A need for studies using a larger cohort is imperative. Due to several challenges, multiple assessments at various points were missing. Such data would provide a richer analysis between different modalities and change in functions, over time.

7 Conclusion

This case helps us to understand the need to individualize treatment, the importance of mutual goal setting, the value of the therapeutic relationship, and the importance of family and community. It highlights the interaction of personal background, the range of emotional responses to injury and its consequences. It focuses on the role of coping skills in long-term adjustment. Working on the sense of self is a long term goal in which many domains come together to contribute towards an overall sense of well-being and life satisfaction.

This approach aligns with Cognitive Rehabilitation Task Force (CRTF) recommendations for compre-hensive- holistic rehabilitation for persons with TBI (Cicerone et al., 2019). The recommendations suggest multi-modal computer assisted cognitive retraining, along with integrative treatment which is goal directed and individualised with group based intervention that improves functional awareness and functional independence.

The current methodology provides a novel approach to holistic rehabilitation by using multiple areas from a patient’s life experiences such as social media, fondness for music, personal life events, hobbies, education and career aspirations. This strategy also provides better ecological validity and is a cost effect way of incorporating milieu-based work.

Conflict of interest

The corresponding author Dr. Shantala Hegde is a recipient of Wellcome Trust DBT India Alliance Intermediate Clinical Fellowship (IA/CPHI/17/1/503348).

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