Exploring the Relationships Between Attention and Communicative Functioning Following Moderate-Severe Traumatic Brain Injury in Adults

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Exploring the Relationships Between Attention and Communicative

Functioning Following Moderate-Severe Traumatic Brain Injury in Adults

Maegan VanSolkema

A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy, the University of Auckland, 2024.

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Abstract

Attention and communication difficulties are common following traumatic brain injury (TBI). The relationship between these two difficulties is intrinsically connected, however the knowledge of how they are connected remains lacking within the literature. This gap in knowledge is felt by clinicians who treat cognitive communication disorders (CCD) as part of their neurorehabilitation caseload. This thesis aims to determine the key definitions and specific relationships between attention and communication. It focuses on determining the most appropriate treatment and understanding the lived experiences and outcomes of this specific difficulty for the person and their family following TBI.

An exploration into how these two constructs is connected was completed using a multiphase mixed methods approach. Evidence was sourced from key stakeholders to

understand their perspectives and lived experiences. The stakeholders included the individual with TBI, family members of individuals with TBI, and the health professionals that work in neurorehabilitation. Phase one was a meta-narrative systematic review of the literature that captured the historical and evolving nature of attention and communication. The review also focused on literature that connected attention and communication with 37 articles as part of the final analysis. The second phase involved an international survey of neurorehabilitation health professionals resulting in 164 respondents as well as two focus groups of health professionals in New Zealand with 17 participants. The third phase used semi-structured interviews to capture the lived experiences of 11 family members living with someone with attention-related communication difficulties. The final phase focused on the person with TBI and their lived experience alongside their cognitive and communication profile.

This research contributes to the profession of speech language therapy (SLT) as it provides a detailed account of this specific condition that affects many individuals following TBI. The research offers a voice to the families that have endured the journey of recovery

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from a TBI. Through understanding the lived experience of attention-related communication difficulties this allows SLTs and all cognitive therapists to better understand, diagnose, and treat this condition. It is hoped that the results will go some way to improving the lives of individuals following TBI.

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Acknowledgements

My doctoral journey has been enriched and fortified with numerous people throughout, without whom I could have not completed this project. I begin with

acknowledging how this entire journey started. The single person that repeatedly said “you have to do a PhD” over and over until I did. Elisa Lavelle-Wijohn is the reason I started the PhD and the person that gave me confidence and endless reassurance that I was supposed to do this. I wish you were still here to see me finish. Also thank you for lending me Crotty!

The supervisory team I had alongside me throughout have been an amazing group of brilliant and strong women. They have guided me but also continued to remind me that what I was doing was awesome. Clare McCann (CMC) has been the most amazing supervisor I could have ever hoped for. Her intelligence is matched by her warmth, compassion, and ability to connect. Whenever we met, I felt she was entirely focused and supporting me, while also knowing she was supervising other PhD students, master’s students, honours students, and the list goes on. A true wonder woman and an amazing role model. Suzanne Barker- Collo (SBC) and Allison Foster (AF) completed the trio of full support. They were always there and gave the perspective, guidance, and support that I needed. I cannot thank you both enough, for the depth of your intellect and experiences. There was never a question you could not answer, and never an email you did not respond to, the three of you are incredible.

I also had the pleasure of working with SLT masters students and a psychology honours project student. Laura Dixon, Jemma Horne, and Emma Gunn were all integral in completing interviews with family members and individuals with TBI. They were all able to catch the passion for supporting individuals following TBI and connected with authenticity to everyone they interviewed. Thank you.

My other life of being a speech language therapist was fully supported by the

management, research committee, and therapy teams at ABI Rehabilitation. I could not have

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done this PhD without having their support through receiving the annual scholarship that contributed towards my fees. Or the day-to-day support of reducing my fulltime position to 4 days a week. The managers Jonathan Armstrong, Shona Lees, and Tony Young were integral to this dream becoming a reality. They supported me and acknowledged my studying

alongside my clinical work to ensure I could balance and manage everything. Also, thanks to the research committee and Angela Davenport at ABI Rehabilitation as another key part of this PhD as they supported recruitment for three phases of this project. Finally, I need to thank my SLT team at ABI Rehabilitation over the past 6 years for always listening, supporting, and getting excited alongside me while I presented and told them about my project.

I also want to acknowledge the clients and their families that I have worked with over the past 16 years. They are the reason I had this question and the driving factor into finding better solutions to help individuals following traumatic brain injury. I want to thank the family members and the individuals with TBI that were part of my doctoral project. They opened their hearts and shared their experiences. Some stated that they had not been ready to tell their story until this project. I am forever grateful for their bravery and strength.

The final group of individuals to acknowledge are my people, my family. We are small, but we are mighty, and I could not do anything without them. My Dad passed away during the pandemic and before I completed my PhD, but he didn’t need to see me finish and told me how proud he was and knew I could do anything. Thank you for telling me Dad. My Mom, who is my rock and my best friend, also passed away two months before final

submission of this project. Thank you for never faulting and always reminding me what an awesome job I was doing. Your love and support were unfathomable. Also, thank you for not talking to me during my last month of writing, even though I know this was the most

challenging part!! Thank you to my amazing in-laws that always checked-in and celebrated

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my small achievements throughout. You both helped me is so many ways, I could not have done this without your help. My ladies, my girls, Penelope and Hazel, we have all grown together during this journey and I thank you for being you. You give me humility and make me humble, being your mum and watching you grow is the best gift I could ever hope for, I love you both to pieces. Finally, my constant and endless gratitude is to Neal, my amazing husband. Your quiet yet unrelenting support is exactly what I needed. The person who never for a moment had doubt that I wouldn’t do this. Thank you for always cooking dinner, always doing this parenting thing equally, listening to me ramble and process everything verbally, and always giving me the time I needed to do this PhD. We are a team and now it is your turn to follow your dream. Thanks for being my person, I love you.

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Table of Contents

Abstract ...ii

Acknowledgements ... iv

List of Figures ... xiv

List of Tables ... xvi

Statement of Contribution ...xvii

Co-Authorship Forms ... xviii

Chapter 1: Introduction ... 1

Nature of the Project ... 6

Phase 1 ... 7

Phase 2 ... 8

Phase 3 ... 9

Phase 4 ... 9

Structure of the Thesis... 13

Chapter 2: Attention and Communication Following Traumatic Brain Injury: Making the Connection through a Meta-Narrative Systematic Review ... 16

Preamble ... 16

Introduction ... 17

Communication After TBI... 17

Cognitive Communication Disorder ... 18

Attention After TBI ... 18

Methods ... 21

Search Phase ... 23

Selection of Documents ... 24

Mapping / Appraisal / Synthesis Phases ... 26

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Theories ... 26

Types of Attention / Types of Communication ... 27

Results / Document Characteristics... 29

Authors ... 29

Theories ... 30

Attention/Communication – Sixth Phase ... 31

Attention Not Specified ... 35

Discourse ... 35

Social Communication ... 36

Lack of Connection ... 38

Discussion ... 38

Theories and Disciplines Over Time ... 38

Attention and Communication Abilities ... 44

Discourse and Social Communication ... 44

Limitations and Future Research Directions ... 47

Conclusion ... 47

Chapter 3: The Individual Lived Experience – Single Case Study ... 49

Preamble ... 49

Introduction ... 49

Methods and Procedure ... 51

La Trobe Communication Questionnaire (LTCQ) ... 53

Behaviour Rating Inventory of Executive Function – Adults (BRIEF-A) ... 53

Test of Everyday Attention (TEA) ... 53

Pragmatic Rating Scale (PRS) ... 53

Results ... 54

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Participant ... 54

Assessments ... 55

Qualitative Data... 60

Attention and Communication – What It Looks Like ... 60

Strategies Used to Manage ... 63

The Adjustment and What It Is Like to Live With These Difficulties ... 64

Discussion ... 65

Conclusion ... 68

Chapter 4: An Exploration of Families’ Lived Experiences of Attention-Related Communication Difficulties Following Traumatic Brain Injury ... 69

Preamble ... 69

Introduction ... 70

Methods ... 71

Study Design... 71

Data Analysis ... 71

Participants ... 72

Procedure ... 72

Results ... 74

Participant Data ... 74

Qualitative Data ... 75

Adjustment to the New Normal ... 76

The Load the Family Carries ... 79

It’s Hard to Have a Conversation With Them ... 83

Discussion ... 85

Adjustment to the new normal... 86

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The load the family carries ... 87

It's hard to have a conversation with them ... 88

Limitations ... 89

Clinical Implications ... 90

Conclusion ... 91

Chapter 5: Key Ingredients of Attention and Communication Following Traumatic Brain Injury: Perspectives of International Health Professionals ... 92

Preamble ... 92

Introduction ... 93

Attention and TBI ... 93

Communication and TBI ... 94

Purpose ... 95

Methods ... 96

Participant Recruitment ... 96

Survey ... 97

Focus Groups ... 98

Results ... 99

Participants ... 99

Quantitative Data ... 103

Discussion ... 115

Discourse ... 117

Linguistic Skills ... 117

Social Communication ... 118

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Clinical Attention ... 119

Limitations ... 120

Conclusion ... 120

Chapter 6: The Treatment Journey of Attention-Related Communication Difficulties Following Traumatic Brain Injury: Perspectives of International Health Professionals ... 121

Preamble ... 121

Introduction ... 122

Study Aims ... 125

Methods ... 125

Participant Recruitment ... 126

Researcher Description ... 127

Survey... 127

Focus Groups... 127

Quantitative Data ... 128

Findings/Results ... 129

Participants ... 129

Key Themes ... 131

Discussion ... 145

Signposts for Attention and Communication Recovery ... 145

Change Agents of Attention and Communication ... 146

Core Therapy Components ... 147

Collaborative Teams ... 147

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Strengths and Limitations... 149

Conclusion ... 149

Chapter 7: Outcomes of Attention-Related Communication Deficits Following Traumatic Brain Injury: Perspectives of International Health Professionals ... 152

Preamble ... 152

Introduction ... 153

Methods ... 155

Measure ... 155

Procedure ... 156

Data Analysis and Rigor ... 156

Results ... 159

Participants ... 159

Themes... 159

Discussion ... 166

Behaviour... 167

Connections ... 167

Self ... 168

Purpose ... 168

Empowerment ... 168

Limitations ... 169

Conclusion ... 170

Chapter 8: Conclusion... 172

Summary of Findings ... 172

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What Are the Most Relevant Definitions of Attention and Communication That Capture

This Difficulty and Are Used by Health Professionals in Neurorehabilitation? ... 174

Can Specific Types of Attention Skills Be Mapped Directly to Specific Types of Communication Skills? If so, What Are the Connections and the Functional Implications? ... 175

What Is the Most Appropriate Treatment for Attention-Related Communication Difficulties Following TBI? ... 175

What Are the Long-Term Outcomes of Attention-Related Communication Difficulties on the Person With TBI and Their Family? ... 176

Significance of the Research and Clinical Implications... 177

Research Limitations ... 179

Future Directions ... 180

Final Reflections ... 180

Appendices ... 182

Appendix A: Ethics Documents ... 182

Appendix B: Interview Script and Agenda ... 193

Appendix C: Ethics Approval ... 196

Appendix D: Ethics Approval ... 207

Appendix E: Survey ... 217

Appendix F: Implementation matrix outlining all questions asked within the survey and focus groups. ... 227

References ... 230

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List of Figures

Figure 1.1 Evidence Concept Map ... 14 Figure 2.1 Aim of current review ... 22 Figure 2.2 Phases of Searching and Mapping Within the Literature Review ... 28 Figure 2.3 Core Concepts of Review With Key Supporting Subgroups of Attention and

Communication Following TBI... 29 Figure 2.4 Frequency of Publications Related to Attention and Communication in TBI

Overtime ... 30 Figure 2.5 Frequency of Key Theoretical Constructs or Models Within the Review That

Relate to Attention and Communication ... 31 Figure 3.1 Thematic Map From the Interview/Qualitative Data ... 60 Figure 4.1 Thematic Map of Qualitative Themes Describing the Lived Experience of Families When Considering Attention-Related Communication Difficulties ... 76 Figure 5.1 The Attentional Makeup of Communication Skills Related to Traumatic Brain

Injury. Communication Skills Reported by the Percentage of Agreement With Each Corresponding Clinical Attention Skill as Rated by the Health Professionals’ Sample.

... 104 Figure 5.2 Communication Skills Related to the Connection With Attention Displayed by

Percentage of Agreement by Health Professionals. Bolded Communication Skills Were Also Part of the Qualitative Data Set and Reinforce the Connections... 107 Figure 5.3 Thematic Representation of the Four Themes With Their Supporting Subthemes

Generated From the Qualitative Data ... 108 Figure 6.1 Sample Size (N) for Each Question in the Survey ... 131 Figure 6.2 Thematic Map Depicting the Four Main Themes From Qualitative Data With

Their Supporting Subthemes ... 132

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Figure 6.3 Percentage of Treatment Options Selected by Health Professionals When Treating Attention-Related Communication Difficulties ... 142 Figure 7.1 Progression of Themes During Phase 4 of Thematic Analysis and Use of

Convergence Coding by MVS and CMC ... 158 Figure 7.2 The Five Themes of How Attention-Related Communication Difficulties Affect

Individuals Post TBI ... 159 Figure 8.1 Evidence Concept Map ... 173

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List of Tables

Table 1.1 Phases of Project Outlining the Chapter Inclusion, Published Articles,

Philosophical Design Decisions, Methods, and the Analytical Process ... 10 Table 2.1 Meta-Narrative Review Phases (Adapted from Greenhalgh et al., 2005) ... 22 Table 2.2 Distribution of Disciplines Within the Sixth Phase of the Review Error! Bookmark

not defined.

Table 2.3 Communication and Attention Matrix ... 33 Table 2.4 Theories of Attention and Communication Associated With TBI Over Time ... 39 Table 4.1 Semi-structured Interview Questions and Script ... 73 Table 4.2 Interview Participant Details Outlining the Relationship to the Person With TBI;

Years Following the TBI; and the Mechanism of the TBI ... 74 Table 5.1 Survey Participants’ Demographic Information ... 101

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Statement of Contribution

The five journal articles and conference presentations are provided in the co-

authorship forms below. These indicate the percentage of contributions from each research team member.

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Co-Authorship Forms

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Chapter 1: Introduction

The story of many begins with one. This story begins with my why. Embarking on a PhD does not arrive without thought, questioning, and a bit of insanity. My story is no different and is grounded in my own experience. I am a clinician first, I think like a

clinician, I act like a clinician, and my decision-making and soul-searching is done through the lens of a clinician. My clinical work as a speech language therapist (SLT) landed me in a specialised area from the beginning of my career, neurorehabilitation of adults following acquired brain injury. The moment I began understanding and working with individuals following traumatic brain injury (TBI) I was immediately drawn to the challenge and complexity that comes with each individual story and case. I love diving into

neuroanatomy, cognition, and behaviour, and understanding why a person is presenting with specific symptoms. Followed by how important it is for me to diagnose and treat people so they can go on and live a life that has meaning is what drives me as a clinician.

Speech language therapy (also known as speech language pathology or SLP) was the bridge between my love of psychology and the specificity of how humans interact with one another using language. Following my master’s degree in SLP I moved to New Zealand and began working at ABI Rehabilitation, the main provider of rehabilitation for adults following moderate to severe TBI. I spent 10 years mastering my skills as a SLT and finding the area of practice where my passions lie. The process of asking questions, finding answers to treatment areas through quality improvements, as well as hearing the stories from my clients and their families resulted in me observing clients with significant cognitive communication difficulties. The actual treatment of cognition within New Zealand was not typically something that SLT did. I am American and I achieved both my undergraduate (BS Psychology and BS Speech and Hearing Science) and masters (MA Speech and Language Pathology) degrees in the United States which provided me with a

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solid foundation and confidence that, yes, cognition is my role, and yes I am not only going to treat this, but I also understand how cognition interacts with language, so, yes, I am going to diagnosis and bring this issue to light.

Being a SLT who works alongside adults following TBI, one begins to understand the grit of human nature, the cost of trauma, the change of an individual and their family unit. The role of the clinician is to find the answer or the culprit in what is driving the difficulties and impairments. Over the 10 years of being a SLT a problem continued to present itself which was glossed over with simple diagnoses and basic strategies, without anyone really understanding what was happening or what was driving the difficulties.

Specifically, what we were seeing, attention or language? Many clinicians simply stated it was attention difficulties and that the client was distracted, but did not truly understand how this was showing up within every task and action the client completed throughout a day. Attention was largely treated at the task level or the environment level, with clinicians removing distractions or breaking tasks down to support one action or step at a time. This certainly improved task performance, but my clients were still struggling with all

conversations. Their discourse was characterised as disorganised with rapid and abrupt topic changes. Their expressive language was usually linguistically intact, but word retrieval and formulation of responses had a scripted, nonspecific, and repetitive nature which resulted in interactions that were removed of context or meaning. They experienced hardships and challenges connecting with others and participating in social exchanges because their focus was always elsewhere. The focus was placed on their internal worries, thought processes, and self-questions, rather than on their communication partner talking.

This problem was one that had been researched extensively within the TBI practice.

However, after delving into more specific treatment areas related to communication I was left still searching and finding statements such as “Although the relationship between

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attention deficits and communication impairment is well understood clinically, the impact of attention interventions on communication after ABI has yet to be explored scientifically”

(MacDonald & Wiseman-Hakes, 2010). This statement mirrored I was feeling as a clinician, but also motivated me to think of myself as a researcher. Did I have my why?

Was there a gap in the literature that matched my daily frustration as a clinician? I had 10 years of evidence to support my question, I had innumerable examples of individuals’

experiences that shaped my own understanding. So how then was I to begin transitioning these experiences into a scientific exploration that would mean something to the people I treat? I believe that I could design a research plan to approach this problem, and this led me to deciding to complete a PhD.

This ambitious goal was complicated and not easy. How did I make it work?

Embarking on the PhD involved balancing my life alongside learning and exploring new ways of thinking. I worked as a clinical lead SLT 4 days a week and had one day a week dedicated to my doctoral research. But my most important role is being a mother to my two incredible daughters. I needed to capture additional hours within a day to extend the time on my PhD, this was largely early mornings before my family would wake. I woke early to read, learn, and study the philosophical underpinnings and methodologies needed to answer my questions. While my daughters trained at the local swimming pool, I sat in the stands and learned how to conduct a meta-narrative systematic review, scouring over each step. In between board meetings at the swim club, volunteering at swim meets, or waiting in school parking lots for pickups, I would review the phases of thematic analysis, revise the themes in my head, and occasionally whip out my laptop and code. Financial challenges, family hurdles, deaths, and sickness are all part of life. I was no different and had to balance the PhD alongside these realities. I was able to successfully receive a scholarship from ABI Rehabilitation throughout my studies. This money was put towards

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paying fees, but the PhD was funded mainly by my husband and me, with support from our family.

I learned how to prioritise my non-negotiables to maintain my life. Sleep, exercise, family, work, and PhD were my pillars throughout this six-and-a-half-year venture. During the final phase of the project, the pandemic began. I continued to work as usual because in New Zealand we were able to function without restrictions essentially. However, when lockdown happened, this reality came to a grinding halt. I was forced to redesign the final phase of my PhD. I had intended to conduct the final phase with a pure dedication to the natural observation of communication. This communication experiment was going to be in a group context alongside typical distractions one would incur in community settings, such as in a café. I had to completely abandon my approved ethics design and go back to the drawing board. My team and I discussed that I didn’t need this final phase as my PhD was already sufficient in scope, but I wanted to acknowledge and highlight the person with TBI as part of my project. I sought and obtained an amendment from ethics and began

recruiting for this new type of Phase 4. This then shifted to being a single case study with similar components. Because I was working clinically throughout the PhD, I never lost sight of the question and focus of this project. I was confronted daily with this difficulty and validated when I began exploring the literature to determine there was indeed a gap.

What is the role and relationship of attentional processes governing

communicative functioning following moderate/severe traumatic brain injury in adults?

This is the question that prior to my PhD had only minimally been explored by others (Alexander, 2006b; Hinchliffe, Murdoch, Chenery, et al., 1998; Isaki & Turkstra, 2000;

Kurland, 2011; Peach, 2013b; Stierwalt & Murray, 2002; Youse & Coelho, 2009).

Previous research reviewed the two constructs of attention and communication in isolation.

Connecting these two abilities within the SLT discipline began in the 1980s when

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cognitive communication disorders (CCD) began to emerge. These difficulties were largely seen following TBI as individuals were presenting with communication

inefficiencies, which were different to the language or linguistic difficulties seen within aphasia. The cognitive-linguistic space started to emerge. Observing attentional difficulties in communication is challenging experimentally, but during clinical interactions,

functional communication and discourse continue to be a space that SLTs are very comfortable. Observing these difficulties continues to grow momentum, especially in discourse, where the SLT has a role in taking conversational samples and determining where the inefficiencies are present. This may result in the diagnosis of cognitive communication difficulties. Chapter 2 provides an in-depth overview of the historical nature and definitions of these concepts.

Attention difficulties have been widely observed within functional tasks; however, there has been a lack of research into attention difficulties being observed within

communication or conversation tasks. When determining how to best approach this challenge of measuring and capturing attention difficulties within communication, discussions were had within the research team that were largely led by a clinician-based approach. It was evident we needed to gain information from the individuals who see this problem daily, live with this problem daily, and treat this problem daily. Using the lived experience and expertise of all stakeholders that are affected by attention-related

communication difficulties, we could then have a very solid foundation to determine the role and relationship attention has on communication. The key perspectives we enlisted were the people with TBI living with these difficulties, their family members who also live and observe these difficulties, and finally, the health professionals who treat and diagnose these difficulties at all stages of the recovery journey. These three levels of evidence, combined with an extensive literature review of these concepts, are the basis of this

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doctoral project. The key questions or problems that have been addressed during this project are:

1. What are the most relevant definitions of attention and communication that capture this difficulty and are used by health professionals in

neurorehabilitation?

2. Can specific types of attention skills be mapped directly to specific types of communication skills? If so, what are the connections and the functional implications?

3. What is the most appropriate treatment for attention-related communication difficulties following TBI?

4. What are the long-term outcomes of attention-related communication difficulties for people with TBI and their families?

Nature of the Project

This is a multiphase mixed methods project consisting of four phases. The

temporal organisation of each phase of the project is detailed in Table 1.1. Also outlined in this table are the worldview, ontology, and epistemology related to each phase and the overarching project. The research design, methods, and analytic process used for each phase are also included. Furthermore, the final form or publication generated from each data set is found in this table. The philosophical underpinning of this project is most aligned with constructivism. Constructivism attempts to answer and approach knowledge, including answering the ontological questions that relate to “what is the nature of reality?”, the epistemological question “what is the nature of the relationship between knower and the knowable?”, and the methodological, “how does one go about acquiring knowledge?”

(Lincoln & Guba, 2013). A multiphase mixed methods design was chosen through the lens

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of interpretive description (Thorne, 2016). The research question could have been

answered using solely a quantitative approach; however, because I was positioning myself within the research through my clinical experience and the nature of arriving at the

question, a more flexible approach was needed that utilised both qualitative and quantitative methods. Interpretative description is a way to use qualitative research for applied practice. It is born out of the nursing discipline and researching the experiences of health topics. It values the subjective and experiential knowledge of both the researchers and the participants. This approach was a good fit with my story and how I wanted to answer the question, what is the role and relationship of attentional processes governing communicative functioning? Interpretative description also acknowledges that the search for a single truth is not the goal, but instead to view the concepts (of attention-related communication) and give the complexity of those issues depth (through lived experiences).

Interpretive description was the overarching framework for the entire project; however, each phase took a slightly different worldview, ontology, and method to answer each question.

Phase 1

The meta-narrative systematic review was completed through the lens of

postpositivism, as there was a level of measurement and accuracy in analysing the content of the literature while also relying on entirely constructed theories. A meta-narrative review is a synthesis that seeks to explore significant and heterogeneous literature from different research disciplines and approaches. This is completed through generating a story or narrative of the timeline and concepts (Booth et al., 2016). It is situated within a

constructivist philosophy of science where it is viewed that ideas and concepts are not from a singular discipline or method of exploration but can be seen within multiple paradigms (Greenhalgh et al., 2005; Kuhn, 1970). This was especially true when viewing

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both attention and communication together rather than as two separate constructs (that is, two very large bodies of research that had not previously shared the same space or been viewed in this way).

Phase 2

Phase 2 of the project focused on the lived experiences and knowledge from health professionals working within neurorehabilitation. A survey and focus group were chosen to capture a larger sample but also to capture more intimate and personal experiences through focus groups and questions within the survey. This phase was a convergent parallel mixed methods design as both the focus group and survey were collecting the same variables, constructs, and similar concepts (Creswell, 2014). It is acknowledged that the temporal organisation of this phase was not parallel, per se, as the participants first completed the survey and then participated in a focus group. However, the data were collected and analysed together. Detailed methods are explained further in Chapters 5, 6, and 7.

The philosophical underpinnings of this mixed methods project continued to reflect constructionism because knowledge was shaped by capturing multiple participants’

perspectives in order to generate a concept or idea about how attention and communication are connected (Braun & Clarke, 2022). The ontological position that is most associated with this phase from the design of the survey through to using reflexive thematic analysis is critical realism (Braun & Clarke, 2022; Madill et al., 2000), as I viewed the participants’

responses through my own clinical or cultural lens. Furthermore, I sought to gauge the reality from my participants’ perspectives when discussing their views on attention and communication.

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Phase 3

This phase shifted to be an entirely qualitative phase that aimed to gain the perspectives of family members’ experiences of living with someone who has attention- related communication difficulties. This question needed to shift to a more contextualism way of evaluating knowledge. This acknowledges that individuals’ perspectives are dependent on their own experiences and contexts; therefore, multiple realities can exist (Braun & Clarke, 2022). The ontological assumption of critical realism still applied as I recognised my knowledge and cultural influence as an SLT on the meaning making of the families’ lived stories. Semi-structured interviews were used as the method to capture their stories and then analysed using reflexive thematic analysis. More detailed methods are provided in Chapter 4.

Phase 4

The final phase of this project involved exploring the lived experiences of a person with TBI who has attention-related communication difficulties. The same ontological and epistemological assumptions as phase 3 were continued; however, the methods of

obtaining this knowledge shifted. This phase used a single case study design with a convergent parallel mixed method through formal assessments and an interview (detailed methods are explained in Chapter 3).

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Table 1.1

Phases of Project Outlining the Chapter Inclusion, Published Articles, Philosophical Design Decisions, Methods, and the Analytical Process Whole Project Objective – Multiphase Mixed Methods

Phases of project Final form Worldview

Ontology, epistemology, &

framework

Research design Methods Analytic process

Phase 1 – Literature review

Chapter 2

Published: Meta- narrative

systematic review

Postpositivism which seeks to measure objective reality that exists “out there” in the world.

This also begins with the theories of attention and communication.

Meta-narrative review (which is rooted in a constructivist philosophy of science) was inspired by the work of Thomas Kuhn, who observed that science progresses in paradigms.

Interpretive Description framework because it explicitly attends to the value of subjective and experiential knowledge.

Meta-narrative Realist and meta- narrative evidence syntheses – evolving standards (RAMESES)

Six guiding principles:

pragmatism, pluralism, historicity, contestation, reflexivity and peer reviews were used to analyse the literature and theories.

Phase 2 – Health professionals’

Perspectives Chapters 5–7

Published:

Outcomes of attention and communication

Constructionism understanding from multiple participants’

meanings and theory generation Critical Realism assessing the perception of my participants’

reality through my cultural lens.

Interpretive Description framework because it explicitly

Qualitative (convergent parallel mixed methods design – collecting both forms of data using the same parallel variables,

Open-ended questions from survey

Thematic Analysis –primarily inductive approach to coding.

Coding focused on both semantic and latent meanings of the data.

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Whole Project Objective – Multiphase Mixed Methods

framework

attends to the value of subjective and experiential knowledge

constructs, or concepts) Published:

Treatment Journey

Mixed methods (convergent parallel mixed methods design)

Survey and focus group

Qualitative: Thematic Analysis – Reflexive – primarily

inductive approach to coding.

Quantitative: frequencies, average, means, consensus ranking.

Submitted: Key ingredients of attention and communication

Mixed methods (convergent parallel mixed methods design)

Survey and focus group

Qualitative: Thematic Analysis – Reflexive – primarily

inductive approach to coding.

Quantitative: frequencies, average, means, consensus ranking.

Phase 3: Family perspectives Chapter 4

Published: Family Perspectives

Contextualism knowledge is evaluated in terms of utility rather than accuracy.

Critical Realism assessing the perception of my participants’

Qualitative framework of phenomenological research

Semi-structured Interviews

Thematic Analysis – Reflexive – primarily inductive approach to coding. Coding focused on semantic meanings of the data.

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Whole Project Objective – Multiphase Mixed Methods

framework

Phase 4: Attention and communication in adults following TBI

Chapter 3

Chapter: Single case study

Contextualism knowledge is evaluated in terms of utility rather than accuracy.

Critical Realism assessing the perception of my participants’

Single Case Study Design

(convergent parallel mixed methods design)

Formal cognitive assessments, observational communication assessment, and semi-structured Interview

Analysis of assessments and reflexive TA of interview data using a deductive approach.

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Structure of the Thesis

This thesis comprises eight chapters in accordance with the University of Auckland’s doctoral statute of 2020 regulations. In addition, the guidelines for including publications in a thesis have been followed. This thesis includes an introduction, five research papers (four published and one submitted), a single case study, and a concluding discussion. One research paper (Chapter 4) has been submitted for publication and is under review at the time of submission of this thesis. The methodology has been introduced within the current chapter, and then each research paper provides greater details of the methods. As a result, there is not a dedicated methodology chapter as would be seen in a traditional thesis. Prior to each published (or submitted) paper is a preamble that includes details as to where each research paper was published, why that journal was chosen, and further clarification and positioning of each publication related to the entire project. The preamble is also a section that provides an insight into my personal reflections, thought processes and the justification for each

publication.

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Figure 1.1

Evidence Concept Map

Note: The four main sources of evidence are conceptualised in the circles above. The squares represent the four main questions answered in the entire project. The arrows connecting each shape are colour-coded to represent the path of evidence for each question, with both

bidirectional and unidirectional arrows present.

The structure of this thesis broadly tells the story from different perspectives,

attempting to answer each of the targeted questions. The four main perspectives, or sources of evidence, informed this project. The concept map in Figure 1.1 portrays how multiple sources of evidence informed the central questions of this project.

The organisation of the chapters does not follow the chronological research phases described above. The justification for chapter organisation is to position the evidence firstly from the literature, followed by the lived experiences of the person with TBI and their families, ending with the health professionals' experience. Through placing the person with

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TBI and their family first this acknowledges the focus of client-centred practice that is within neurorehabilitation (Terry & Kayes, 2020). Chapter 2 defines and outlines the history of cognitive communication, attention, and communication theories. This chapter also provides the published meta-narrative systematic literature review of attention and communication following TBI. Chapter 3 then reviews attention-related communication difficulties from the perspective of the person with TBI. This chapter is a single case study that gives depth to the individual's lived experience by incorporating cognitive and communication assessments and interview data. Chapter 4 then shifts to another important stakeholder, the family. This published chapter provides further insight into how family members observe and experience attention-related communication difficulties with their loved ones. Details of their coping strategies, along with what it is like having conversations with their loved one, are included.

Chapters 5–7 are part of a series of published research papers reviewing the perspectives of health professionals on the topic of attention and communication. These three chapters are all sourced from a survey and focus group data. Chapter 5 provides an overview of the

connections between these two concepts; Chapter 6 outlines what is involved in treating attention-related communication; and Chapter 7 details the outcomes of attention-related communication difficulties following TBI. The thesis finishes with a final chapter that amalgamates the main findings and concludes with the clinical implications, future directions, and final reflections.

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Chapter 2: Attention and Communication Following Traumatic Brain Injury: Making the Connection through a Meta-Narrative Systematic Review

Preamble

This chapter was published as an article in Neuropsychology Review (VanSolkema et al., 2020). This journal article marked the beginning of my journey in exploring the topic. I knew that both constructs of attention and communication following TBI were vast. I wanted to capture the story of how previous researchers explored these areas, as well as determine if my question was new or novel. When identifying and selecting a methodology to use for my literature review, I spent time reviewing and exploring epistemology and how my worldviews as a clinician shaped my entire project. I was drawn to the familiarity of postpositivism, which seeks to measure objective reality that exists “out there” in the world. This allowed me to start with what I knew, which were the theories of attention and communication.

Positioning myself within the project and acknowledging that I do not see attention and communication as a single discipline-specific area of study but instead understand that multiple perspectives and research paradigms are involved. This perspective and approach aligned with a meta-narrative systematic review using the RAMESES methodology fit (Greenhalgh et al., 2005; Wong et al., 2013). Meta-narrative review is rooted in a

constructivist philosophy of science and was inspired by the work of Thomas Kuhn, who observed that science progresses in paradigms (Kuhn, 1970). Using this methodology, I could be comprehensive in my search and descriptions, alongside positioning these constructs in a historical manner to understand their evolution over the decades. I also wanted to capture the entire research landscape involved with attention and communication following TBI to understand how these terms were defined and conceptualised. My literature review did not seek to review a type of treatment nor a meta-analysis in the quantitative realm. Instead, it acknowledged the project as encompassing a mixed methods design that touched on

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storytelling. I was able to begin this journey of finding evidence that would shape the rest of my doctoral project.

Introduction

A TBI is defined as an alteration in brain function or other evidence of brain pathology caused by an external force (Menon et al., 2010). The effects of a TBI on an individual’s functioning can be vast and devastating, ranging from physical changes (Ponsford, Downing, et al., 2014), sensory changes (Ponsford, Downing, et al., 2014), cognitive and social changes (McDonald et al., 2014a; Ponsford, Bayley, et al., 2014;

Ponsford, Downing, et al., 2014; Tate et al., 2014; Velikonja et al., 2014) to changes with communication and language (Colantonio et al., 2009; Elbourn et al., 2019; MacDonald, 2017; Togher, Wiseman-Hakes, et al., 2014). Two areas of functioning impacted by moderate-severe TBI and are the focus of this review are communication and cognition, particularly attention.

Communication After TBI

Communication difficulties are one of the hallmark characteristics of adults who present with TBI and can be either subtle or overt depending on a multitude of factors such as the environment and communication partners (Halper et al., 1991; MacDonald, 2017;

MacDonald & Wiseman-Hakes, 2010; Togher, McDonald, et al., 2014; Togher, Wiseman- Hakes, et al., 2014). Communication difficulties following TBI are specific to each person, depending on injury factors such as locus of the lesion, severity of injury, and type of injury.

The resulting cognitive, linguistic, emotional, physical, and behavioural changes contribute to communicative competence following TBI (MacDonald, 2017; McDonald et al., 2014b). In addition, communication difficulties can present not as a language disorder of form, such as aphasia, but a disorder in the use of language or ability to adhere to social rules that govern

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an interactive exchange between people as seen within discourse and pragmatic language use (McDonald, 1998; McDonald et al., 2014b).

Cognitive Communication Disorder

This interactive exchange and complex interplay can also be referred to as cognitive communication and is frequently disordered following TBI. Cognitive communication disorder (CCD) is used to differentiate language difficulties post-TBI from the disorder of aphasia. CCD affects 80%–100% of adults with moderate-severe TBI (MacDonald &

Wiseman-Hakes, 2010). The American Speech-Language Hearing Association (ASHA, 2007a) defines CCD as difficulty with any communication aspect resulting from deficits or disruption of cognitive functioning. Communication includes listening, speaking, gesturing, reading, and writing in all language domains (e.g., phonologic, morphologic, syntactic, semantic, and pragmatic). Cognition includes cognitive processes and systems (e.g.,

processing speed, attention, memory, organisation, and executive functions) (ASHA, 2007a).

Areas of function affected by cognitive impairments include behavioural self-regulation, social interaction, activities of daily living, learning, and academic and vocational

performance (ASHA, 2007a). Further communication deficits associated with TBI relate to discourse, language, interpersonal communication, and affect recognition. These include tangentiality, topic maintenance, and social communication skills associated with interpreting emotions and social cues. Language difficulties following TBI relate to listening or auditory comprehension, verbal expression or word finding, subvocal rehearsal or self-talk, verbal response speed, verbal reasoning, and reading comprehension (McDonald et al., 2014b).

Attention After TBI

Attention or concentration difficulty is an area of cognition that affects 50% of people following TBI long-term (Ponsford, Downing, et al., 2014; van Zomeren & Van den Burg, 1985). This core cognitive process is considered a foundation for all other cognitive skills

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(Cohen et al., 1993) and is the focus of the current review. William James’s (1890) definition of attention started the discussion about this cognitive concept,

Everyone knows what attention is. It is the taking possession by the mind, in clear and vivid form, of one out of what seem several simultaneously possible objects or trains of thought. Focalization, concentration, of consciousness are of its essence. It implies withdrawal from some things in order to deal effectively with others. (pp. 403–404) This process can be interpreted to be central to the function of communication. Over time, the exploration and definitions of attention have evolved, with periods of great discovery in the mid-20^th century (Baddeley, 1986; Norman & Shallice, 1986; Posner & Petersen, 1990;

Schneider & Shiffrin, 1977; Shiffrin & Schneider, 1977) with further refinement and a shift to a more functional or natural observation of attention in everyday life, especially when viewing TBI within the context of social and communicative functioning (Beauchamp &

Anderson, 2010; McDonald et al., 2014b; Stierwalt & Murray, 2002; Youse & Coelho, 2009).

Multiple definitions and terminology for attention have been used within the literature. For this review, the fundamental concepts of attention will include Posner and Petersen’s (1990) three systems of functions of attention. Namely, 1) involves orienting to sensory events or arousal; 2) involves target detection and selecting sources of information from external stimuli and internal stimuli or memory to be processed; and 3) involves maintaining an alert or vigilant state over time for further processing of information paired with action (Posner & Petersen, 1990). Attention can be defined clinically as separate entities involving different aspects of concentration. The clinical model of attention from Mateer and Sohlberg (2001) separates attention into subtypes and provides a model of attention that relates to the behaviours of function. It is separated into five distinct attention processes:

Focused attention: The ability to respond discretely to specific visual, auditory, or tactile

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stimuli; Sustained attention: The ability to maintain a consistent behaviour response during continuous and repetitive activity, where vigilance is maintained over time during continuous activity. This also implies working memory in which the mind actively holds and manipulates information; Selective attention: The ability to maintain a behavioural or cognitive set in the face of distracting or competing stimuli. Freedom from distractibility; Alternating attention:

Capacity for mental flexibility that allows individuals to shift their focus of attention and move between tasks with different cognitive requirements, thus controlling what information will be selectively processed; Divided attention: Ability to respond simultaneously to

multiple tasks or multiple task demands and where multiple simultaneous task demands are being managed (Mateer & Sohlberg, 2001). Another critical definition of attentional

functioning is the Supervisory Attentional System (SAS), where attention operates as a control function of multiple schemas to either activate or inhibit behaviour depending on motivation and goal-related behaviour (Norman & Shallice, 1986). SAS is seen to be related to other attentional terms of executive functioning, or where attention is a control function for further cognitive abilities. Finally, aspects of memory can also be included in the definition of attention, such as attention span and working memory, where visual or auditory information is held momentarily and has limited capacity but is still processed (Baddeley, 1986). The processing of multiple stimuli can also be viewed as a system that modulates language

through the cognitive process of executive functioning and attention. “All executive functions require the continuous modulation of attention across brief time spans” (Alexander, 2006a).

Executive function is a cognitive ability that has long been part of the attention debate and multiple models view attention to be part of executive function or controlling function (Alexander, 2006; Baddeley, 1986; Lezak, 1983; Luria, 1969; Norman & Shallice, 1986;

Posner & Petersen, 1990; Pribram & McGuinness, 1975; Ylvisaker & DeBonis, 2000).

Executive function can be viewed as a system that controls and modulates behaviours based

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on goals both internal and external. Executive function is best represented as a core set of abilities, including regulating or inhibiting behaviours and emotions; self-monitoring and changing behaviours in response to “online” information from the immediate environment and from past experiences; allocation of attention to support the constant changing or modulation of new information; problem-solving and decision making; metacognition;

adapting mental flexibility; organisation and planning; and working memory (Baddeley, 1986; Goldstein & Naglier, 2014; Lezak, 1983; Luria, 1969).

The complex acts of communication following TBI and attention following TBI have been researched extensively separately, but the joining of the two empirically has been attempted by only a few authors (Alexander, 2006a; Hinchliffe, Murdoch, Chenery, Baglioni, et al., 1998; Isaki & Turkstra, 2000; Kurland, 2011; Peach, 2013a; Stierwalt & Murray, 2002;

Youse & Coelho, 2009). There remains a lack of empirical research that successfully links these two complex behaviours and processes. One possibility for why this has not occurred is the sheer number of disciplines and methodologies that conduct research into attention and communication following TBI. The current review aims to tell the story of how attention and communication have evolved over the past century and how they have been researched within the scope of TBI. A second aim is to link these two complex concepts into a manageable construct that can be further refined through future research. (Figure 2.1).

Methods

A meta-narrative systematic review (Greenhalgh et al., 2005) was undertaken to explore a heterogeneous body of research exploring the areas of attention and communication abilities following TBI in adults. This methodology was specifically chosen because it helps to address the complexity and diversity of the two topics being studied. Multiple disciplines and various research traditions have reviewed these topics, all of which contribute to the overall meaning, with a limited number of studies looking specifically at how attention

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abilities contribute to or interact with communication skills following TBI in adults.

Acknowledgment and inquisitive exploration of these research traditions are required to build a more comprehensive theory and understanding of how communication and attention

abilities interact with one another following TBI. Separating the two in the literature has offered essential insights into the difficulties experienced by adults following TBI. Placing these two concepts side by side can offer more specific guidance into the complicated but important relationship between them.

Figure 2.1

Aim of the current review

The systematic approach of meta-narrative methodology has previously been outlined within a structured framework, and quality reporting standards have been described in the RAMESES project (Wong et al., 2013). The application of this approach is provided in Table 2.1, and each phase is outlined below.

Table 2.1

Meta-Narrative Review Phases (Adapted from Greenhalgh et al., 2005) Meta-Narrative Phases

Meta-narrative review - Historical perspective - Disciplines / Research

traditions - Theories

Communication Diffculties

Traumatic Brain Injury Attention /

Concentration

Difficulties

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1. Planning Phase

a. Multidisciplinary team (MDT) that incorporates the relevant research traditions:

neuropsychology, speech language pathology, health researcher, and subject librarian.

b. Outline the initial research question in a broad, open-ended format:

i. What is the relationship between attention and communication in adults following TBI?

ii. What aspects of attention interact with communicative abilities in adults?

2. Search Phase

a. Scoping the literature – Initial search led by intuition, informal networking and “browsing” with the goal of mapping the diversity of perspectives and approaches.

i. Communication: theories, cognitive communication, social communication, discourse, social cognition, emotional regulation, communication difficulties following TBI, sociolinguistic.

ii. Attention: theories, executive function, working memory, information processing, types of clinical attention.

iii. Perspectives from speech language pathology, psychology, neuropsychology, and cognitive neuroscience.

b. Search for seminal conceptual papers in each research tradition by tracking references of references. Evaluate these by the generic criteria of scholarship, comprehensiveness, and contribution to subsequent work within the tradition.

c. Search for empirical papers by electronic searching key databases and reference lists of key papers (1^st–3^rd phases).

3. Mapping Phase

Identify (separately for each research tradition):

i. The key elements of the research paradigm (conceptual, theoretical, methodological and instrumental).

ii. The key actors and events in the unfolding of the tradition (including main findings and how they came to be discovered).

iii. The prevailing language and imagery used by scientists to “tell the story” of their work.

iv. identification of key groups/ of topics reviewed and relating to the review question.

v. Allow multiple phases (4^th–6^th phases) of mapping for refinement of the articles chosen to be included in the final group.

4. Appraisal Phase

Using appropriate critical appraisal techniques/quality assessments:

i. Evaluate each primary study for its validity and relevance to the review question.

ii. Extract and collate the key results, grouping comparable studies together.

5. Synthesis Phase

a. Identify all the key dimensions of attention and communication following TBI that have been researched.

b. Taking each dimension in turn, a narrative account of the contribution made to it by each separate research tradition.

c. Treat conflicting findings as higher order data and explain in terms of contestation between the different paradigms from which the data were generated.

6. Recommendation Phase

Through reflection, multidisciplinary dialogue, and consultation with the intended users of the review.

i. Summarise the overall messages from the research literature along with other relevant evidence.

ii. Distil and discuss recommendations for practice, policy, and further research.

Search Phase

The initial phases of scoping the literature began with reviewing literature led by intuition, informal networking, and “browsing” within TBI and CCDs (MacDonald &

Wiseman-Hakes, 2010; Ponsford, Janzen, et al., 2014). This was the starting point to begin

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exploring other disciplines within the field of TBI that have researched the topic of attention and communication. Within the initial scoping phase, the research paradigms of

neuroscience, cognitive psychology, neuropsychology, SLP, and medicine were present and were the leading disciplines to study the topic of attention extensively. These research traditions emerged looking at attention with varying definitions, instruments of assessment, specificity, and functionality.

A comprehensive initial search was carried out exploring multiple databases and key journals that would incorporate the pluralism of disciplines that research the core concepts, including Pub Med, Library of Congress, PsychArticles, PsychBITE, PsychINFO,

SpeechBITE, PsychEXTRA, Linguistics and Behaviour, Medline, Psychology and

Behavioural Sciences Collection, Scopus, Embase, CINAHL, Journal of Head Trauma and Rehabilitation, ASHA wire, University of Auckland library catalogue, and further informal searches through previous literature scoping and examination of references contained within key papers. The time frame for the search was January 1900 to January 2019. Search terms included: attention, and/or communication, and/or TBI. Further refinement of the searches was completed by including the more specific and alternative keywords: adults, English, attention, cognition, language processing, traumatic brain injuries, head injury, cognitive communication, and executive functioning.

The total number of articles that emerged from the initial search phase was 38,063.

Selection of Documents

The inclusion criteria for document selection, based on each paper’s title, abstract, or keywords, required the following: human population/sample with TBI or head injury. The inclusion criteria for selecting full scientific articles required the following: an aspect of attention (e.g., sustained, divided, alternating, selective, focused); adult population 18 years or older; written in English. Alternative acceptable words or terms included listening,

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working memory, social cognition, discourse, social communication, language processing, and executive functioning. The multiple and closely associated definitions and theories of attention (e.g., working memory, executive functioning, and listening) within the different research paradigms were included to ensure a fully comprehensive understanding of attention as it relates to communication.

The exclusion criteria were used to exclude papers that focused on different clinical populations, aetiologies, and disorders of acquired brain injury. Acquired brain injuries that include stroke and hypoxic/anoxic brain injuries were excluded, as these represent different aetiologies that could potentially impact the findings. TBI is a heterogeneous group that, at best, should be compared alongside each other rather than against all types of acquired brain injury. Papers were excluded if it was clear that attention was not assessed (e.g., abstract reasoning). The final inclusion term CCD, joins cognitive abilities with communication abilities. This term can be broad but needs to be included because articles about CCD typically discuss attention within their definition.

The remaining exclusions were pragmatically determined during the final sixth phase of review. All assessment and treatment literature were removed from the search as it was not within the scope of this review. While reviewing the literature on topics of communication, multiple avenues could have been explored. The decision was made to exclude skills associated with reading, writing, and literacy and literature that did not indicate a clear reference or description to the topic of attention being evaluated because this is separate from the functional act of communication.

After applying the exclusion criteria, there were 1,499 articles; after removing duplicates, there were 576.