Submitted in Partial Fulfillment of the Degree Of

Evaluating ‘RE-ID’: An acceptance and commitment therapy group intervention exploring identity after acquired brain injury

by

Alison Mac Crosain

Submitted in partial fulfillment of the degree of

Doctor of Psychology

(Clinical Psychology)

School of Psychology

Faculty of Health and Medical Sciences

University of Surrey

April 2017

© Alison Mac Crosain 2017

Statement of Originality

This thesis and the work to which it refers are the results of my own efforts. Any ideas, data, images, or text resulting from the work of others (whether published or unpublished) are fully identified as such within the work and attributed to their originator in the text. This thesis has not been submitted in whole or in part for any other academic degree or professional qualification.

Name: Alison Mac Crosain

Overview of Portfolio

The experience of an acquired brain injury (ABI) can fundamentally alter an individual’s sense of self-concept and identity. This change in identity can impact on other outcomes following ABI including engagement with rehabilitation, vocational activity, mood and quality of life. This thesis aimed to explore the effectiveness of ‘RE-ID’, a vocational rehabilitation acceptance and commitment therapy (ACT) group intervention exploring identity following ABI.

Part one of this portfolio represents a review of qualitative literature exploring identity after ABI from the perspective of the individual who has experienced the ABI. The findings suggest that positive and negative changes to self-concept are experienced following ABI, and that individuals employ a variety of strategies to adjust and accept these changes including comparison and consideration of values, goals and meaningful activity. Part two presents an empirical paper investigating the effectiveness of ‘RE-ID’ using a mixed methods approach. The findings lend preliminary evidence to support the effectiveness of an ACT based group intervention for identity following ABI.

Part three is an overview of clinical experience, detailing clinical placements and the range of clinical experience gained in each. Finally, part four includes a table of academic assessments completed.

Publications/Presentations

An earlier version of the literature review was presented as a poster presentation at the 13th Conference of the Neuropsychological Rehabilitation Special Interest Group of the World Federation for Neuropsychological Rehabilitation (NR-SIG-WFNR) in Glasgow, Scotland on 11th July 2016.

Table of contents

Acknowledgements / Page 5
Research Part 1: The impact of acquired brain injury on identity: A qualitative review / Page 6
Research Part 2: Evaluating ‘RE-ID’: An acceptance and commitment therapy group intervention exploring identity after acquired brain injury / Page 55
Part 3: Summary of Clinical Experience / Page 149
Part 4: Table of Assessments Completed During Training / Page 152

Acknowledgements

Firstly to Dr. Laura Simonds, thank you for your thoughtfulness and guidance throughout this project. You went above and beyond, and your support and encouragement helped me to enjoy the experience.

To the staff team and participants from the vocational rehabilitation service, thank you for your time and enthusiasm.

To mum, dad and Conor, thank you for believing in me for the long haul.

Thank you Grace for being my cheerleader! I’ll be forever grateful for your thoughtfulness (and all of your cooking) over the past few months.

To Caroline and Hannah, thank you for the Mondays.

Thank you to my friends, family, clinical supervisors and colleagues. Thank you especially to Gill, Jen,Kirsty, Sophie, Team Organic and Cohort 43, for your listening and laughter over the past three years.

~

And finally, and most importantly, thank you to Dr. Catherine Doogan.

I would (dare I say obviously) not be on the verge of becoming a clinical psychologist without you. Go raibhmílemaithagat for everything since that first walk across Waterloo Bridge.

Research Part 1:

The impact of acquired brain injury on identity: A qualitative review

Word Count: 10,464 total

6,217 (excluding Abstract, References, Tables & Figures)

Abstract

Aim: The current review aimed to appraise and synthesise the qualitative literature exploring identity after acquired brain injury (ABI), from the perspective of the individual who has sustained the injury. The literature reviewed explored self-reported changes to identity and how individuals make sense of these changes. Method: Three databases were searched (PsycInfo, MEDLINE and SCOPUS) for articles published prior to February 2016. Twelve articles met criteria for inclusion in the current review. Thematic analysis was used to extract and synthesise the findings from the included studies. Results: Two broad themes were identified. The theme of ‘change’ refers to self-reported positive and negative changes, alongside some sense of continuity. The theme of ‘adjustment’ refers to how individuals make sense of these changes including the journey of acceptance, a sense of confusion, comparison with self and others and the importance of values, goals and meaningful activity. Discussion: The review suggests the potential utility of identity-focused interventions. More research is needed to assess efficacy and effectiveness of such interventions.

Introduction

Acquired brain injuries (ABI) include traumatic brain injuries, hypoxic brain injuries, ischaemic brain injuries and brain injuries from other medical causes e.g. tumours or encephalopathies (Gurd, Kishka & Marshall, 2010). The consequences of ABI vary, and can include cognitive, emotional, behavioural and social sequelae, the magnitude of which depends on the severity of the injury. ABI can result in difficulties in self-awareness (Ownsworth & Clare, 2006), cognitive deficits (Rohling, Faust, Beverly, & Demakis, 2009), attentional problems (Park & Ingles, 2001), fatigue (LaChapelle & Finlayson, 1998), pain (Nampiaparampil, 2008), visual deficits (Suchoff et al., 2008), sleep problems (Orff, Ayalon & Drummond, 2009) and emotional difficulties (Anson & Ponsford, 2006) amongst others.Ownsworth (2014) proposes thatfundamentally a brain injury “can alter one’s sense of self or the unique and persisting qualities that define who we are” (p1), thereby connecting the experience of brain injury to the concept of self and identity.

The term ‘self’ is used in various ways across the social and behavioural sciences. It includes reference to the self as an inner psychological entity at the centre of a person’s experience, beliefs about oneself and, self as the mechanism that regulates behaviour. Taken together, these three uses represent the self as the person’s experience of themselves, their perceptions and feelings about themselves, and their efforts to regulate their behaviour. Ones ‘self’ is influenced by attentional, cognitive, executive, emotional, and motivational processes (Leary & Tangney, 2003).

The ‘self’ is a broad term understood to include both ones identity and self-concept. These terms are often used interchangeably throughout the literature, and both are included in the current review. However, Baumeister (1999) offers a helpful distinction. Identity is ‘a definition placed on oneself’ (p248), while self-concept is ‘the individual’s beliefs about himself or herself, including the person’s attributes and who and what the self is’ (p247). Ownsworth (2014) offers a schematic representation of the system of identity as relevant to brain injury, suggesting that sense of self is a global system comprised of “multiple identities which are tied to specific social roles and relationships and generalised self-attributes” (p35). Importantly, it is considered that the ‘self’ is comprised of certain characteristics that remain stable and persist over time (e.g. attributes or traits), and other characteristics that continue to be constructed and change over time (e.g. self-efficacy). Markus and Nurius (1986) also emphasise the importance of considering identity over time, suggesting that a person’s identity reflects their past, present and future potential selves.

If identity is influenced by attention, cognition, executive processes, emotion and motivation then, given the profile of deficits arising from ABI, it stands to reason that a person’s identity can be impacted by the experience of an ABI and its associated consequences. In one of the first studies exploring self-concept following ABI, Tyerman and Humphrey (1984) found that the majority of their sample (72%; N=25) reported changing significantly ‘as a person’ following their ABI, with positive, negative and neutral changes reported. More recently, both quantitative and qualitative reviews have supported the notion that ABI impacts identity and self-concept. In a review of quantitative literature exploring changes to identity after traumatic brain injury (TBI), Beadle, Ownsworth, Fleming and Shum (2015) reported a negative change in identity following TBI in 11 of the 15 papers reviewed. This change was measured by at least one reported negative evaluation of post-injury self compared to pre-injury self, or by a more negative rating of self compared to healthy matched controls.Interestingly, no significant differences were found for reported self-esteem or personality between the TBI samples and trauma or orthopedic control groups. This suggests that identity changes experienced following TBI may be similar to those experienced following other significant traumatic life events or as a consequence of living with other chronic health conditions.

The qualitative literature also evidences identity change following ABI. In a review exploring the individual’s experience ofTBI, conducted to inform the selection of outcome measures, this change in identity after brain injury was further evidenced (Levack, KayesFadyl, 2010). Of the eight themes identified to describe the enduring experience of TBI, two themes directly related to identity: ‘disconnect with pre-injury identity’ and ‘reconstruction of self-identity’. In a scoping review of literature exploring occupational identity, Bryson-Campbell, Shaw, O’Brien, Holmes and Magalgaes (2013) described themes of ‘loss of identity’ and ‘stigmatized identity’ following ABI.

The literature offers various hypotheses to explain why changes to identity are experienced following ABI. Identity is essentially social as it is the view of self that is shared by other people and society broadly (Baumeister, 1999). It involves a sense of continuity (sameness over time) and differentiation (being distinguishable from other people) and is made up of various components, which reflect the varied social roles and relationships that people occupy (Baumeister, 1999). Stets and Burke (2000) describe two processes involved in the development of identity: self-categorisation and social comparison. Self-categorisation involves classifying oneself in relation to existing categories (i.e. perceived similarities with the in-group and differences to the outgroup), while social comparison is the evaluative component, comparing oneself to others who may be more or less favourable. These processes can be impacted by the experience of ABI. Klonoff (2010) highlights this potential impact of ABI on the social aspect of identity, noting that social roles held at family, community and societal level could be greatly altered as a result of an ABI. Hallett, Zasler, Maurer and Cash (1994) found that individuals reported a change in 40% of social roles following a TBI, with 71% of these changes described as losses.

Gracey, Evans and Malley (2009) suggest that successful rehabilitation is the result of resolving discrepancies between current identity and an aspired-to identity, which may be the remembered pre-injury identity or an ideal imagined self. Their ‘Y-shaped’ model proposes that the convergence of these identities (in the ‘V’ at the top of the ‘Y’) involves awareness and acceptance of changes, and is a key component of rehabilitation, which then allows for the development of the post-injury self (in the trunk of the ‘Y’). Therefore, gaining a detailed understanding of identity changes experienced following ABI can inform the development of interventions to enhance acceptance, adjustment and the development of a positive self-concept following ABI. A focus on identity and self-concept is important because they influence wellbeing, contentment, and quality of life (Doering, Conrad, RiefExner, 2011; Tsaousides et al., 2009; Vickery, Gontkovsky, & Caroselli, 2005) and also behavioural outcomes such as avoidance (Riley, Dennis & Powell, 2010).

The literature offers various hypotheses to further explain these changes to self-concept experienced following ABI. Self-concept, defined broadly as beliefs about oneself, can include both self-esteem and self-efficacy. Self-esteem relates to perceptions of self-worth and the evaluation of oneself, while self-efficacy relates to an individual’s perception of their ability to control their own functioning and the environment around them (Baumeister, 1999; Bandura, 2001; Leary & Tangney, 2003). In a longitudinal study of self-esteem across the lifespan, Orth, Trzesniewski and Robins (2010) found that the trajectory of self-esteem is a quadratic curve, with an increase during young and middle adulthood. Income, employment status, functional health, and chronic health conditions were identified as influential factors in self-esteem. Given an ABI is likely to impact on all four of these factors, it not surprising that experiencing an ABI during adulthood could interrupt this self-esteem trajectory. The negative impact of ABI on self-esteem was supported by an exploratory study by Cooper-Evans, Alderman, Knight, and Oddy (2008), which found that individuals reported lower self-esteem following ABI. As performance experiences are an important influence on self-efficacy beliefs (Bandura, 1977), it is expected that functional deficits associated with an ABI would also have negative impact on self-efficacy. Perceived self-efficacy has been found to be the most important predictor of global life satisfaction following TBI (Cicerone & Azulay, 2007).Furthermore, reduced self-efficacy is known to influence the self-regulation of motivation and, subsequently, a person’s outlook and expectations (e.g. feeling optimistic or pessimistic about future outcomes), incentive to act, ability to persevere in the face of adversity, and making choices (Leary & Tangney, 2003). Thus, reduced self-efficacy beliefs can impact on other outcomes including engagement with rehabilitation following ABI.

The current review aims to synthesise the qualitative literature exploring identity after ABI, from the perspective of the individual who has sustained the injury. A qualitative review was undertaken to complement a recent review of the quantitative literature (Beadle et al., 2015). It aims to establish what self-reported changes to identity and self-conceptare experienced following ABI and to explore what the research suggests about how individuals make sense of these changes. Furthermore, it aims to identify clinical practice and research implications specifically related to the development of identity-focused interventions following ABI.

Method

Search and inclusion strategy

A search for articles exploring identity and self-concept following ABI was completed, using the search terms ‘brain injury’, ‘head injury’, ‘traumatic brain injury’ or ‘acquired brain injury’ AND ‘self-concept’ or ‘identity’. A systematic search was completed in February 2016 using three electronic databases: PsycInfo, MEDLINE and SCOPUS. Articles published in peer reviewed journals and written in English were included. Papers were included only if they were primary qualitative research and clearly explored the subjective experience of working age adults following ABI using first-hand accounts. All qualitative methodologies were considered.

Quality Appraisal

There is little consensus regarding how to assess the quality of qualitative research, though it is acknowledged that it is important to avoid drawing inaccurate conclusions (Thomas & Harden, 2008). The current review used the National Institute for Health and Care Excellence (NICE) quality appraisal checklist for qualitative studies as a guideline for assessing quality (NICE, 2012). This checklist considers (i) theoretical approach, (ii) study design, (iii) methods of data collection, (iv) trustworthiness, (v) methods of analysis and (vi) ethical issues. There is considerable debate about the utility of calculating exact quality appraisal scores; In the context of clinical trials, the Cochrane Collaboration advise against using tools that yield a summary rating score (Higgins et al., 2011). In line with this, the use of a summary rating score was deemed inappropriate in the current review, as it would be difficult to justify putting a numerical value on subjective qualitative research and attempts to do so would likely be inconsistent. Consequently, the current review does not assign quality scores; instead, the quality appraisal tool was used flexibly to ensure included papers met quality criteria that were considered essential. These criteria were: specification of a theoretical framework to situate the study;presence of a clearly specified research question; sufficient detail on the participant(s) and how they were recruited; and,aclear description of the process of data collection and analysis.

Data Extraction

Data were extracted using guidance outlined by Thomas and Harden (2008). Data extracted included all material identified as ‘findings’ or ‘results’ within the empirical papers, and included quotations from participants.

Synthesis of studies

Data were analysed using thematic analysis (Braun & Clarke, 2006). A three-stage method of thematic synthesis was used (Thomas & Harden, 2008). An iterative and inductive analysis was undertaken, similar to the method described by Wolverson, Clarke and Moniz-Cook (2016). The initial stage involved line-by-line reading and re-reading of extracted findings to isolate themes related to identity and self-concept following ABI. These themes, with accompanying direct quotes from participants, were interpreted and coded into descriptive themes within and across studies. Further analytical themes were generated based on these descriptive sub-themes. Direct quotations from participants in the original studies were included to illustrate each theme in order to remain as true to the original data as possible.

Results

Search results

The initial search of three electronic databases (PsycInfo, MEDLINE and SCOPUS) identified 862 articles (Figure 1). 198 duplicates were excluded. A further 590 articles were excluded based on exclusion criteria following the screening of titles and abstracts. Reasons for exclusion included non-human population, not published in English, non-ABI population, non-adult population, exploring other consequences of ABI including cognitive deficits, agnosia and fatigue, exploring the perspectives of carers or family members rather than the individuals themselves. 74 full text articles were reviewed for eligibility, with a further 60 excluded, as they did not use a qualitative methodology or were not specifically exploring identity or self-concept. Fourteen articles proceeded to quality review, and 12 were selected for inclusion in the current review.