Self-Identity after Brain Injury

Tamara Ownsworth

• Publisher: Psychology Press
• Year: 2014
• ISBN:
  9781317820185
• Edition: 1
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

An injury to the brain can affect virtually any aspect of functioning and, at the deepest level, can alter sense of self or the essential qualities that define who we are. In recent years, there has been a growing body of research investigating changes to self in the context of brain injury. Developments in the cognitive and social neurosciences, psychotherapy and neurorehabilitation have together provided a rich perspective on self and identity reformation after brain injury. This book draws upon these theoretical perspectives and research findings to provide a comprehensive account of the impact of brain injury on self-identity.

The second half of this book provides an in-depth review of clinical strategies for assessing changes in self-identity after brain injury, and of rehabilitation approaches for supporting individuals to maintain or re-establish a positive post-injury identity. The book emphasizes a shift in clinical orientation, from a traditional focus on alleviating impairments, to a focus on working collaboratively with people to support them to re-engage in valued activities and find meaning in their lives after brain injury.

Self-Identity after Brain Injury is the first book dedicated to self-identity issues after brain injury which integrates theory and research, and also assessment and intervention strategies. It will be a key resource to support clinicians and researchers working in brain injury rehabilitation, and will be of great interest to researchers and students in clinical psychology, neuropsychology, and allied health disciplines.

1 Overview of self-identity after brain injury

 

 

 

This introductory chapter highlights the importance of addressing self-identity issues in brain injury rehabilitation and presents an overview of the book.

 

An injury to the brain can affect virtually any aspect of functioning. At the deepest level it can alter one’s sense of self or the unique and persisting qualities that define who we are. People with brain injury may perceive losing some fundamental part of their selves (e.g., ‘I’ll never be a patch on who I was’). Close family members and friends may grieve the loss of the person and the relationship they once had. Changes to self after brain injury are complex and not readily observable or easy to address in rehabilitation. Neuropsychological rehabilitation broadly aims to assist people to manage the everyday consequences of brain injury and to live a meaningful and fulfilling life. All rehabilitation approaches contribute in some way to rebuilding a person’s self-identity regardless of the aspect of functioning focused on (e.g., mobility, speech or memory). However, people do not reconstruct their sense of self from objective functional gains per se, but rather the personal meaning they derive from their everyday experiences after brain injury.

The importance of self in rehabilitation has long been recognised, with neurorehabilitation and psychotherapy approaches used in combination to facilitate identity transition after brain injury (Ben-Yishay et al., 1985; Wilson et al., 2009; Ylvisaker, McPherson, Kayes & Pellet, 2008). Despite growing interest in self-identity after brain injury (Gracey & Ownsworth, 2008), there are few evidence-based guidelines to support identity-oriented assessment and intervention practices.

Research investigating changes to self in the context of brain injury has only emerged in the literature over the past few decades, stimulated largely by the seminal work on self-concept by Tyerman and Humphrey (1984). The interface between social psychology and cognitive neuroscience (i.e., social neuroscience) allows for a more advanced understanding of how sense of self emerges as a product of our neurobiology, culture and their interaction (Feinberg, 2011a; Jetten, Haslam & Haslam, 2012; Rochat, 2011; Walsh, Fortune, Gallagher & Muldoon, 2012). Neuropsychological models offer accounts of how cognitive and emotional subsystems of the brain work together to create an ongoing sense of self that actively constructs meaning in our day-to-day experiences (Conway & Pleydell-Pearce, 2000; Damasio, 1999; LeDoux, 2000).

In a keynote address at the Annual Brain Impairment Conference in Brisbane in 2010, Professor Barbara Wilson identified that research on self-identity after brain injury was one of the top ten cutting-edge developments in the field. In an article based on the address, she noted that: ‘Contemporary models such as Conway’s (2005) “self-memory system” and Haslam et al.’s (2008) work on social identity theory provide a means of thinking about the interplay between brain systems, cognition, personal and social identity’ (2011, p. 35). In light of such progress, it was timely to write the first book dedicated to self-identity issues after brain injury. This volume seeks to highlight recent developments in theory and research relevant to self-identity and consider the implications for clinical practice, thus providing a useful resource for students, clinicians and researchers in the field.

This book aims, firstly, to provide a context for understanding self-identity changes after brain injury by reviewing different theories of self and identity that derive from psychology, sociology and cognitive neuroscience. The second aim is to provide a comprehensive account of the impact of brain injury on self-identity. Thirdly, the book aims to review clinical strategies for assessing self-identity processes and interventions for supporting individuals to re-establish a positive identity after brain injury. The book’s final aim is to summarise the main areas of progress in self-identity and brain injury research and identify directions to advance the field.

Overview of the book

Before considering the impact of brain injury on self-identity it is important to understand what is meant by ‘self’ and ‘identity’. Chapter 2 provides an overview of historical perspectives and more contemporary theories that contribute to our current understanding of self-identity. This discussion draws initially on the ideas of early philosophers such as Aristotle and Locke, whose insights bear remarkable similarity to social neuroscience perspectives on self-identity today. The chapter then focuses on theoretical advances during the 19th and 20th centuries, including perspectives from psychoanalytic, developmental, humanistic and social psychology which collectively highlight the influence of biology, socialisation and culture. A discussion of more contemporary accounts of self and identity in the 21st century follows, based on cognitive and social neuroscience developments. In the final section of the chapter these perspectives are integrated into a framework which supports readers to consider the potential for changes to self after brain injury.

To introduce brain injury, Chapter 3 summarises the main causes and functional consequences and provides a developmental perspective. The diverse factors contributing to brain injury outcomes are conceptualised within a biopsychosocial framework, which recognises the interactive influence of pre-morbid, neurological, social environmental and psychological factors. The second half of this chapter focuses on the impact of sustaining a brain injury early in life and implications for emerging sense of self in childhood and adolescence. Empirical evidence regarding biological and social vulnerability and factors moderating the relationship between the neuropathology of brain injury and functional outcomes is discussed. The psychosocial consequences of brain injury for children and adolescents are reviewed, with a specific focus on the impact of metacognitive and social cognition impairments on emerging sense of self. Two case studies (Dan and Jasmine) illustrate the complex interplay of factors influencing identity formation after childhood brain injury.

Chapter 4 presents a comprehensive review of psychological adjustment and selfidentity changes after brain injury in adulthood. Psychological adjustment refers to the process of becoming aware of, making sense of, and adapting to changes in one’s functioning and life circumstances. The inter-related processes of self-awareness, sense-making and coping are examined within a biopsychosocial framework. Building on this framework, research investigating self-identity changes after brain injury is specifically reviewed. Overall, this research indicates that premorbid characteristics and neuropsychological status influence perceived changes to self, and that opportunities to re-engage in meaningful activities and social roles are instrumental to rebuilding sense of self. An adaptive self-identity after brain injury is fostered by everyday experiences that provide personal meaning and reinforce self-worth.

Many different approaches are used in clinical practice to measure self-perceptions and other processes related to self-identity. The issues surrounding measurement of subjective phenomena are initially considered along with some caveats. Adopting the framework presented in Chapter 4, Chapter 5 initially reviews approaches for assessing self-awareness, sense-making appraisals and coping after brain injury. These approaches include self-report questionnaires, interviews and behavioural observation approaches. The focus then shifts to assessment of self-concept and changes in self-identity after brain injury, with an appraisal of methods developed specifically for the brain injury population. In the final section of Chapter 5, assessment approaches are considered for children and adolescents with brain injury. Approaches developed for the general paediatric population that have potential utility for brain injury are discussed with recognition that these methods require psychometric evaluation for this population.

The importance of focusing on identity issues in rehabilitation has long been recognised. Any intervention that aims to improve people’s functioning and influence their self-perceptions contributes in some way to the identity reformation process. Chapter 6 reviews individual psychotherapy and neurorehabilitation approaches for adults with brain injury. Strategies for enhancing the working alliance and engagement in therapy are initially discussed. The application of and evidence base for diverse approaches, including psychoeducation and feedback, goal-directed interventions, cognitive and behavioural therapies and project-based learning are described. Further, the utility of technological aids for supporting sense of self by enhancing attainment of goals and recall of everyday experiences is considered. Chapter 6 advocates for approaches that systematically integrate psychotherapy and neurorehabilitation to support emotional and cognitive functioning and participation in valued activities and relationships.

Chapter 7 emphasises the key influence of social factors and peer support in the identity reconstruction process, and provides a review of group, holistic and community-based interventions. The characteristics and efficacy of structured group interventions and comprehensive holistic rehabilitation programmes that create a therapeutic milieu are considered. A major challenge for clinicians is to support people with brain injury to maintain their gains after rehabilitation and build upon these outcomes through sustainable networks of support. Community initiatives that can provide a sense of belonging, achievement and contribution include paid work, volunteering, leisure activities, advocacy, group projects and leadership opportunities. Chapter 7 concludes with a discussion of the potential for social media to enhance social functioning and well-being of people with brain injury.

The effects of brain injury are far reaching, and can destabilise the entire family unit and the relationships and identity of its members. An essential aspect of rehabilitation involves supporting family members to adjust to the impact of the brain injury on their lives and well-being. The first section of Chapter 8 discusses the impact of brain injury on ‘family identity’ and reviews three main approaches to supporting family members. Approaches include: 1) involving family members in therapy for the person with brain injury, 2) interventions designed specifically for family members, and 3) family system interventions. The second part of Chapter 8 summarises rehabilitation approaches for children with brain injury. Despite a general absence of interventions that focus specifically on self-identity issues for children, related approaches in the literature include holistic neuropsychological rehabilitation, parenting or family-based interventions, and multi-component context-sensitive approaches (e.g., home, school and work).

The final chapter summarises and integrates leading developments in the selfidentity and brain injury literature and provides directions for future research. Key advances in the field include: a) brain imaging studies mapping the neural correlates of self-related processing and social identification; b) theoretical accounts depicting the impact of brain injury on self-perceptions and identity; c) research revealing the role of biopsychosocial factors in identity reconstruction after brain injury; d) development and preliminary validation of measures assessing changes to sense of self; e) emerging evidence to support the efficacy of individual, group and community-based interventions for enhancing psychological adjustment to brain injury; and f) family-based therapy and contextualised approaches for supporting people with brain injury and their family members. Priority areas for future research include: validating paediatric assessment tools, modelling the identity transition process over time and evaluating the efficacy of individual, group and family-based interventions for improving self-concept after brain injury. The chapter concludes the book by identifying future research directions along these lines.

Conclusion

A brain injury is a life-altering experience that leads to changes in people’s abilities and social situation. The most complex consequences entail changes in selfhood, which are perplexing for individuals, family members and professionals. Understanding and managing changes in self-identity is an integral part of rehabilitation. Although this has long been recognised, systematic research investigating changes to self in the context of neurological disorder has only emerged in the literature over the past two decades and such research is in its infancy. The focus on self and identity reformation therefore represents a relatively new frontier in brain injury research. It is hoped that this book stimulates research and clinical innovations that will enrich the lives of people with brain injury and their families.

2 What is the self?

Historical and contemporary accounts of self and identity

Before we consider the impact of brain injury on self-identity it is important to understand the concepts of ‘self’ and ‘identity’. An in-depth account of the philosophy and scientific study of the self could easily fill several volumes, as indeed many have (see Brinthaupt & Lipka, 1992; Leary & Price Tangney, 2003). A journal (Self and Identity) devoted to this area attests to the strong level of scholarly interest in understanding who we are and what makes us different from, or the same as, others. This chapter provides an overview of key terminology, historical perspectives and psychological and social neuroscience contributions to understanding self and self-identity. An integration of these perspectives at the end of the chapter provides a framework for considering the potential for changes to self after brain injury and the processes for rebuilding self-identity in this context.

Definitions of self and identity and related terminology

‘The self’ has been referred to as that conscious being and agent responsible for unique thoughts and actions, or the essential nature of a person that endures over time (Brinthaupt & Lipka, 1992). This encompasses the collective characteristics we think of as our own, including bodily experiences and internal psychological states (Dumont, 2013). The self is often referred to as a cognitive structure (e.g., a mental schema or theory) that is multi-dimensional and hierarchical in nature (Feinberg & Keenan, 2005). Other authors refer to the self as a narrative sequence or language-constructed metaphor (Freeman, 1992). The self possesses both consistent characteristics and those continually under construction. Thus, sense of self reflects our past and present selves as well as our possible selves, or who we might become (Markus & Nurius, 1986). The term self-construal refers to an individual’s sense of self in relation to others. Two main types of self-construal co-exist: independent self-construal, or one’s perceived uniqueness and separateness from others, and interdependent self-construal, based on our relationships with others (Markus & Kitayama, 1991).

The self encompasses many inter-related concepts including self-awareness, self-concept, self-esteem, self-efficacy and identity. Self-awareness refers to the capacity to experience ourselves as distinct from others and the environment and to consciously perceive our own abilities and internal states (Damon & Hart, 1982). Self-concept is commonly described as the overarching thoughts and feelings a person has about him- or herself in order to arrive at a definition of self (Rosenberg, 1965). Self-concept encompasses awareness of one’s unique and stable characteristics, values and behaviour (existential self-concept) and self-identification based on comparison with other people (categorical self-concept) (Harter, 2012). Self-esteem has been referred to as the evaluative component of self-concept, or the judgements that an individual makes about his or her own worth, value or competence (Schweitzer, Seth-Smith, & Callan, 1992). The two terms are closely interrelated, and it has been found that people with low self-esteem typically have a less stable and well-defined self-concept compared with those with high self-esteem (Setterlund & Niedenthal, 1993). There is also overlap between these concepts and self-efficacy. Self-efficacy refers to sense of personal agency, or a person’s evaluation of and beliefs about his or her ability to perform particular tasks or cope with certain situations (Bandura, 1989). Each term can refer to a global set of beliefs regarding one’s self-worth and competency (i.e., global self-concept or general self-efficacy), or specific domains and behaviours, as covered in Chapter 5.

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Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• List of figures
• List of tables
• Series preface
• Acknowledgments
• 1 Overview of self-identity after brain injury
• 2 What is the self? Historical and contemporary accounts of self
• 3 Introduction to brain injury and consequences during childhood and adolescence
• 4 Psychological adjustment and self-identity changes after brain injury
• 5 Approaches for assessing changes to self after brain injury
• 6 Individual psychotherapy and neurorehabilitation approaches
• 7 Group and community-based interventions
• 8 Family and paediatric interventions
• 9 Summary and future directions
• Appendix A: Head Injury Semantic Differential III
• Appendix B: The Brain Injury Grief Inventory
• References
• Author index
• Subject index