Special issue editorial: The self after brain injury

Introduction

Brain injury is a major event with long-lasting consequences that can disrupt an individual’s life trajectory. Marked changes typically occur in people’s physical, cognitive, emotional and behavioural functioning which can reduce participation in valued activities and social roles. Collectively, these changes to personal abilities, attributes and lifestyle may alter how people see and feel about themselves, or their sense of self and identity (Ownsworth, 2014). Some individuals can derive positive meaning from their experiences after brain injury, which stimulates growth and positive states of well-being. However, for many, the losses associated with brain injury have a predominantly negative impact on self and are a major source of ongoing distress. Changes to sense of self after brain injury influence individuals’ engagement in rehabilitation and health and participation outcomes. Accordingly, the topic of self after brain injury continues to receive considerable attention in research, clinical practice and healthcare policy.

Yet, there are various challenges to conducting research in this area. First, self is a complex and subjective construction, and it can be challenging to conceptualise, distinguish and measure the diverse components of self, including self-awareness, self-concept, self-esteem, self-efficacy and self-identity (Ownsworth, 2014). Secondly, due to the interplay of biological, psychological and social factors that influence self-understanding, a person’s experience of changes to self is unique and multi-faceted. Thirdly, related in part to the previous two points, sense of self is difficult to operationalise and target in intervention studies due to the multiple levels (e.g., situation specific self-evaluations, domain-specific self-concepts and global self-representations) (Ownsworth & Haslam, 2016). Understanding of how brain injury impacts on sense of self and effective ways to address problems with self-awareness and self-identity in rehabilitation are complex yet important issues.

Building on the previous special issues of Neuropsychological Rehabilitation on Pathologies of Awareness (Clare & Halligan, 2006) and Self in Rehabilitation (Gracey & Ownsworth, 2008), this volume showcases the latest theoretical and research advances on self after brain injury. It is particularly exciting to see the growth in research on developmental perspectives of self, through investigating the experiences of children and adolescents and their families. Also evident is a shift from theoretical accounts drawing primarily on neuroscience or social psychology to more applied frameworks in clinical practice, focused on processes of rebuilding sense of self.

The 19 articles in the special issue are contributed by leading researchers in the United States, Canada, Australia, Europe and the United Kingdom who provide an interdisciplinary perspective on self in the context of acquired brain injury. Articles focus on theoretical developments on sense of self, empirical investigations of processes underlying changes to self, and clinical frameworks and novel interventions to support identity reformation through meaning making, social participation, and positive re-engagement in life. Our intent is that this special issue will deepen readers’ conceptual knowledge, stimulate new ideas for assessment and therapy practices and inform priorities for the next decade of research relevant to understanding and managing the impact of brain injury on the self.

A scoping review paper by Toglia and Goverover sets the scene, evaluating the impact of the Dynamic Comprehensive Model of Awareness (DCMA) over the last 20 years. Toglia and Kirk’s (2000) model is a dominant framework that has guided conceptualisations, assessment approaches and interventions for self-awareness after brain injury. Toglia and Goverover highlight the considerable empirical support for the multidimensional nature of self-awareness and distinction between intellectual (metacognitive knowledge) and online awareness components. There is now solid evidence supporting the use of occupation-based interventions for improving online awareness. However, there is still limited understanding of how metacognitive knowledge and online awareness interact or influence each other through repeated task experience and feedback. In a complementary review focused on conceptualising self-awareness in adults with brain injury, Sansonetti et al. highlight the evolution of theoretical models from a predominant focus on neurocognitive factors underlying awareness deficits to viewing self-awareness as a more dynamic concept that is responsive to intervention and can improve over time. They advocate for ongoing assessment in clinical practice to capture changes in self-awareness with consideration of broader factors influencing presentations such as social context and psychological denial.

It is well known that changes to sense of self are experienced across different neurological disorders, including non-progressive and progressive conditions. In a novel review on self-concept changes in people with multiple sclerosis (MS), Emery et al. identified that MS-related events can serve as a catalyst for changes in self-understanding. Individuals were found to react to these changes with varying degrees of resistance, including compartmentalising or concealing the diagnosis, and acknowledgement through grief and loss and/or integration of MS self-concept. However, due to the lack of longitudinal studies, understanding the timing and nature of changes in self-concept across the disease course remains a priority for future research.

The impact of brain injury on the developing brain can be far-reaching due to the disruption to biological and social maturation processes. Sense of self and self-awareness emerge throughout childhood, with self-appraisals becoming more realistic or accurate during adolescence to underpin a more stable and balanced sense of self in adulthood (Ownsworth, 2014). Paediatric brain injury has the potential to alter children’s self-perceptions of their abilities and self-worth. However, measurement of sense of self and self-awareness in children can be challenging, due to the cognitive and language requirements of assessment tools and the need to account for developmental changes. To address these issues, Lloyd et al. developed the Paediatric Awareness Questionnaire (PAQ), a multi-domain measure of self-awareness for children and adolescents with traumatic brain injury (TBI). A principal components analysis of the PAQ supported the domain-specific nature of self-awareness, with five distinct components evident. Children’s self-awareness of their cognitive functioning was poorer than self-awareness of socio-emotional functioning, ADLs and communication.

Focusing on children’s self-worth or evaluative judgements, Khan et al. examined global and domain-specific self-esteem after brain injury. Children with mild to severe TBI had lower self-esteem for behavioural and academic domains than typically developing children. Higher self-esteem was associated with younger age at injury, more severe TBI, frontal pathology and better parent mental health. Implications for intervention relate to the need for early family-centred models of care to enhance child and parental resilience.

In one of few studies to examine self-perceptions in children with very early brain injury (prior to 6 years), Crowe et al. found that children with stroke and TBI had similar levels of self-esteem and self-perceptions compared to healthy controls. Children with brain injury from lower socio-economic backgrounds had greater behavioural and social problems which in turn was related to poorer self-perceptions. The integral role of social factors in identity development of children with brain injury was further examined in a mapping review by Kakonge et al. . They focused on adolescence, a critical stage of identity development for starting to define “Who am I?” Their review highlighted adolescents’ tendency to experience a discrepancy between their pre-injury and current selves and their desire to find new and adaptive ways to define themselves. Recommendations for clinical practice relate to interventions to support adolescents’ identity formation through social participation.

Adopting a relational perspective of identity change, Glennon et al. interviewed adolescents with TBI and their mothers. Shared processes of “continuity and change” emerged along with varied reactions of “acknowledging and rejecting” that impacted sense of normality for adolescents. Mothers had a key role in supporting adolescents’ identity development and strived to manage their own sense of loss. Complementing this qualitative research, Perkins et al. presented a model to guide Identity-Focused Multidisciplinary Rehabilitation (I-FoRM) for children and youths with brain injury. Drawing upon existing models of psychosocial adjustment and paediatric resilience and self-concept development, I-FoRM depicts a cyclical adaptation process through which children learn about self in the world. Identity development can be supported in rehabilitation through experiential processes of self-evaluation and fostering motivation for participation, tolerance for challenge, self-regulation and self-awareness.

The relationship between self-awareness and neurocognitive function and social communication was a focus of several studies. Jaywant et al. found that individuals with stroke were more likely to overestimate their performance on a Weekly Calendar Planning Activity, had poorer online awareness (self-recognized errors) and were less likely to use a self-checking strategy than healthy controls. These metacognitive abilities were more impaired for individuals with right hemisphere stroke than left hemisphere stroke.

Fleming et al. also examined accuracy of performance judgements in adults with TBI in the context of prospective memory (PM) using experiential feedback on a board game activity. Individuals who initially underestimated their performance became more accurate in evaluating their activity-based PM, whereas over-estimators showed improved judgements of accuracy on event-based PM. The authors propose that experiential feedback may be useful to improve accuracy of self-evaluations for individuals with either impaired or heightened self-awareness of PM.

Focusing on social cognition, Sherer et al. examined the relationships among self-awareness, emotion recognition and social communication. Impaired facial emotion recognition was associated with poorer social communication, which in turn was related to poorer vocational function and loneliness. The inability to judge the emotional responses and states of others can create a breakdown in the ability to effectively communicate. Taken a step further, their findings suggest that impairment in relational skills may pose a threat to sense of self through limiting social participation opportunities.

Analysis of social communication skills provided the basis for understanding identity after TBI in research by Keegan et al. Using systemic functional linguistics, a conversation analysis revealed key topics of anger and aspirations as individuals negotiated their identity during social exchanges. Anger was related to lack of independence and autonomy whereas aspirations and goals facilitated positive outcomes. Their novel approach highlighted how interventions focused on conversational strategies have the potential to contribute to identity reconstruction.

Participating in social activities and forming new social roles can also support individuals to positively redefine themselves after brain injury. Guided by social identity frameworks, Griffin et al. investigated social continuity and social gain hypotheses to understand social connectedness and relationship to post-traumatic growth after brain injury. In line with the social gain hypothesis, they found that a greater number of new group memberships was associated with higher post-traumatic growth, through strengthening social connectedness. Accordingly, forming new social groups may help people to find meaning and derive a positive sense of self after brain injury. This notion is reinforced in research on a group project-based advocacy intervention by Hoepner et al. Participants collaborated on a video presentation of their lived experience of the consequences, strategies and supports for brain injury to share with health care providers. Findings highlighted how experiences of the advocacy project fostered a renewed appreciation of sense of self and alternate personal narratives in the chronic phase of recovery, through the experience of positively influencing the broader brain injury community.

The final subset of articles focuses more broadly on processes of adjustment that support identity reformation after brain injury. Qualitative research by Mamman et al. depicted individuals’ experience of living a “reshaped reality” which was characterized by changes in social participation and self-identity. Daily challenges highlighted a sense of nothing being the same, which required individuals to navigate by “rebuilding and restarting”. Those able to embrace new challenges by developing strategies, accessing supports and discovering new activities adjusted better to their reshaped reality. Paasila et al. similarly focused on individuals’ efforts to find meaning in the context of TBI. They initially examined the reliability and validity of the Reasons for Living inventory, a measure of adaptive beliefs and expectations for living, for use in brain injury. They found that higher levels of resilience and self-esteem and greater reasons for living were associated with lower suicidal ideation, depression, and hopelessness. Their findings highlight the potential value of therapeutic interventions focusing on beliefs regarding reasons for living and building resilience in TBI clients with suicidal ideation.

Domensino et al. explored processes of adjustment through individuals’ experiences of holistic neuropsychological rehabilitation. The central theme “it is an ongoing process” reflected the phases of confrontation, training, experimenting and coming to terms with their injury in rehabilitation. Positive identity outcomes included gaining self-esteem and sense of competence and learning to adapt. Finally, a single-case experimental study by Sathananthan et al. evaluated a group-based intervention designed to enhance adjustment to life and valued living after brain injury. Their eight-week face-to-face intervention “VaLiANT” (Valued Living After Neurological Trauma) combined components of cognitive rehabilitation and psychological therapy and was found to be feasible and acceptable, thus supporting a future larger Phase II trial.

Summary and future research directions

Overall, these theoretical, assessment and intervention advances provide greater understanding of ways to address problems with self-awareness and negative self-concept in practice. Ideas for identity-based interventions include focusing on values or beliefs regarding reasons for living, building resilience or tolerance of challenges, learning about self through experiential exercises, analysis of conversational strategies, group project-based learning and other opportunities to support individuals to form new social groups, build connections and discover activities that help to adaptively redefine oneself. Priorities for future research relate to the need for longitudinal studies to capture dynamic changes in self-awareness and self-identity over time, particularly with a view to understanding the events or catalysts for change. In the paediatric field, recommendations relate to tracking the emergence of self-awareness across different functional domains, and investigating relationships between age of onset, self-awareness and self-esteem and social environmental factors. In terms of intervention, investigation of the mechanisms of change in rehabilitation, or how self-perceptions and metacognitive skills are shaped by learning experiences and social feedback would improve the evidence base for self-awareness interventions. Empirical evaluations of identity-based interventions are still in their infancy, in part because of the challenges associated with measurement of sense of self. We hope this special issue provides readers with a deeper understanding of the impact of brain injury on sense of self and stimulates new ideas for clinical practice and research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Preparation of this editorial was supported by a Planning and Dissemination grant from the Canadian Institute of Health Research (CIHR).