Empowering People With ABI To Acquire Better Insight Into Brain Injury: An Application Of ...

306 Pages·2012·2.45 MB·English

Empowering People With ABI To
Acquire Better Insight Into Brain
Injury: An Application Of Educational
Principles

Christine Yvonne Durham
GradDip Ed (Curriculum), BEdSt (Post Graduate), MEd Melb

A thesis submitted in the fulfilment of the requirements for the degree of
Doctor of Philosophy
RMIT University
College of Science, Engineering and Health
School of Health Sciences

May 2012
DISCLOSURE OF POTENTIAL BIAS
This qualitative, interpretative inquiry places me, a person with acquired brain injury (ABI),
as a ‘visible’ researcher, the primary instrument of analysis and interpreter of data (Denzin,
1994; Wolcott, 1990; Van Maanen, 1995), as a more realistic situated speaker, subjectively
engaged with the data (Richardson, 1994). Some chapters of this thesis are written in the first
person, as reflective text, to provide an honest disclosure of the bracketing of my opinion, as
someone with acquired brain injury rather than hiding my undeniable connection to the
subject of ABI by a ‘studied neutrality’ or apparent absence of the author in-text (Van
Maanen, 1988).

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DECLARATION
I certify that except where due acknowledgement has been made, the work is that of the
author alone; the work has not been submitted previously, in whole or in part, to qualify for
any other academic award; the content of the thesis is the result of work which has been
carried out since the official commencement date of the approved research program; any
editorial work, paid or unpaid, carried out by a third party is acknowledged; and, ethics
procedures and guidelines have been followed.

Christine Yvonne Durham
May 2012

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ACKNOWLEDGEMENTS
I am greatly indebted to my senior supervisor Dr Paul Ramcharan for his insight, wisdom,
support and elegant guidance. This thesis has benefited from his belief in the subject under
investigation, and my capabilities in spite of my brain injury. I am grateful for his
encouragement, assistance and good humour. My thanks also go to my supervisor Dr
Josephine Lang for her expert guidance on educational matters. Finally, I express my
gratitude to Ms. Tina Thornton for her skilful and knowledgeable editing of this thesis.
This thesis would not have been possible without the blood, sweat and support from my
husband Ted, who drove me to each interview, set up the computer and sound recording
equipment, assisted in carrying and setting up the large bird cage to interviews, and other
presentations. It was cumbersome and awkward. I will always remember completing an ABC
television interview that showed Keys to the ABI Cage – knowing Ted had split stitches from
back surgery manhandling it from the car, unbeknown to him, his shirt was soaked with
blood. Fortunately, the surgeon could restitch the wound immediately after the interview. Ted
also encouraged and supported me each step of the long journey, and spent many days as
husband/research assistant.
My son Rob assisted me in so many various ways including providing a listening ear and
adviser, and with his computer skills. My son Ken has helped with formatting PowerPoint®
presentations and notes on hundreds of occasions. My daughters Helen and An have given me
unconditional encouragement and support, and my grandchildren Lucinda, Leroy, Alexander,
Hannah, Spencer, Sebastian and Ruben have showered me with love and support.
This study would not have been possible without the participants who most generously
allowed me into their world, to see and feel their experiences.
This study would not have been undertaken but for the insight and kindness of the late Dr
Maureen Malloy who, 18 years ago, in a hour-long evaluation of my condition for the
lawyers, allowed me to see myself not as a broken crushed person, finished for life, but by
teaching me a little about brain injury, she gave me back some of my ‘old’ self. Dr Malloy
was most interested and encouraging about the intent and focus of this study. I honour her,
and thank her on behalf of all the people with brain injury whose lives she has touched.

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And lastly I thank my father, the late Marcus Rupert Liege Tarrant, whose words, wisdom and
encouragement about the power of the mind is deeply imbedded in my mind. Dad would
always say to me ‘Nil desperandum’ – and I never have.

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Dedicated to my husband Ted
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PREFACE

This phenomenological thesis is a record of a journey that examines the narratives of people
with brain injury as they explore negative and positive elements of living with brain injury. It
demonstrates that brain damage damages more than the brain. Primarily it sets out to capture
the voice and opinions of thirty six people with brain injury whose voice may not have been
heard. It also considers the views of ten people who care for and support people with brain
injury.

The contribution of the participants has been recognized in the acknowledgements and the
reader of this thesis might wish to read pen portraits of these people who freely shared their
stories, thoughts and experiences. Each ABI case is unique and in part that unique-ness is
both important to the story but also troublesome in terms of anonymity. Many and varied
direct quotes of participants will be found in Chapters 7 and 8, however the wellbeing of the
participants was of prime importance, and their wellbeing could be affected if they were
recognized by other people with brain injury or by those providing professional or family
care. Many people with brain injury ‘know of’ others with brain injury, and even a pen
portrait of composite ‘characters’ could make identification of specific people possible
because their particular stories, the special way they acquired their brain injury and the
ramifications of brain injury on their life. This could influence what are already very fragile
social networks and relationships.

Additionally many participants were frank in their criticism of medical professionals and the
rehabilitation experience. If a health professionals recognized the input from someone who
had been a client, it could lead to difficulties for the participant. For these reasons I thought it
was imperative that the participants could not be identified in case they might be adversely
affected.

This thesis directs the reader away from the deficit based model that is widely used by
medical and health professionals working in the ABI field, to the ‘insider’s’ view and to
educational principles that are not the perspectives normally adopted by studies into brain
injury. Instead, as I have brain injury, the content and themes put forward the insider’s view
of brain injury, and brain injury is investigated from their perspective, as they are led to
reflect upon and acquire better insight into their brain injury experience. Since I am an
educator by training and profession, educational principles direct and scaffold this thesis.
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The participant’s difficulties and needs are embedded in each step of this journey through the
employment of van Maanen’s concept of ‘Headwork’. ‘Headwork’ (shown in Figures placed
in boxes) in chapters 1, 3, 4 and 5, allows the reader to understand the concepts that inform
the method, and the development of the new and novel interview and learning tool including
the talk-about cards. At the same time, ‘Headwork’ allows in-depth consideration of those
ethical dilemmas that needed to be addressed so as to accomplish this as a thesis that ‘did no
harm’. This explains the unusual structure and content of this thesis, which has been
developed specifically to allow the reader to view brain injury through a new lens.

Because of the unusual structure and nature of this thesis it was purposefully ‘anchored’ with
chapter introductions to review concepts covered in previous chapters, set out the information
to be covered in the chapter, and to make a brief mention of information examined in the
following chapter in order to anchor the chapter in the thesis and make connections to support
the flow of the thesis arguments.

Chapter 1 allows the reader to enter the private lifeworld of a person struggling with brain
injury. I share my own personal challenges of a life changed by brain injury in order to
provide an example of the challenges that may be experienced by participants in this study.
This background information explains the reason why the method employed by this study
carefully considered ways to take these difficulties into account in order to do no harm to the
participants: to preserve their rights, privacy, dignity and wellbeing. The raison d’être and the
focus of this research is discussed and examples of the ‘narrative’ that can be told using
symbols and images is explained.

This chapter purposely visits and discusses ‘grey’ literature, including information from brain
injury support organizations for several reasons: to allow the reader to enter the lifeworld and
rehearse the learning journey or information gathering most likely to be carried out by the
person with brain injury and their family; to prepare the reader for the focus of this thesis
where the researcher is a collaborator, an ‘insider’ with the participants, rather than being a
thesis ‘about’ or ‘on’ brain injury; to acknowledge the voice of people with brain injury to
demonstrate that weight will be given to their words, rather than only looking at input from
professionals.

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Many studies show people with brain injuries lack self awareness, and information written by
people with brain injury is discussed to demonstrate that some people do have awareness and
understanding of the phenomena of brain injury, and to highlight issues they consider
important. ‘Grey’ literature is examined to allow the reader to compare and contrast the
person’s experience of brain injury with concepts of people who care for and support people
with brain injury, with information about different models or paradigms of brain injury, and
the areas focused upon in quantitative body-object studies in Chapter 3, and qualitative body-
subject studies in Chapter 4.

Another example of how this thesis is structured in a non-traditional way is the placement of
information in Chapter 2. This brief introduction to the method developed specifically for this
study, ‘Keys to the ABI Cage’, has been deliberately placed in Chapter 2, and not later in the
document, in order to provide an explanation and overview of the research method employed
in this thesis which was developed to address some of the problems associated with brain
injury as outlined in Chapter 1. ‘Keys to the ABI Cage’ employs a visual and symbolic
methodology to increase the participatory and emancipatory nature of this study.

As the following chapters show, the cage is populated piece by piece, and yet it seemed
necessary for the reader to have the cage set out in its entirety so that they could see how it
would all fit together. In that way the significance of each part to the whole would be
apparent, and avoid the reader struggling to understand the meaning and intention of each
disembodied part. The early presentation of the cage therefore aimed to help the reader to
conceptualize the order and the place each part played in the development of ‘Keys to the ABI
Cage’.

The intent of dividing the literature review of brain injury studies into two chapters was to
examine studies from the perspective of how the data was obtained from the participant. For
this reason studies have been sorted and pigeonholed into two different paradigms: Chapter 3
considers models and paradigms of ABI and reviews some body-object quantitative studies;
Chapter 4 considers ABI from the perspective of the body-subject model of some qualitative
studies.

An argument for employing educational learning principles is put forward in Chapter 5. This
chapter provides an overview of important theories of learning including the vital nature of
motivation and engagement in the learning process, the theory of association, cognition and
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thinking, and the concepts of the learner having multiple ‘intelligences’ and different
preferred learning styles.

Chapter 6 explains the research methods employed including the interview and the
‘Reflection kit’, the sample, ethical considerations, and triangulation. The second part of this
chapter discusses analysis of the 150 000 words of data obtained from the interviews, and
includes a worked example of Interpretative Phenomenological Analysis that was employed.

Chapter 7 carefully considers the findings of the study in regards to factors that negatively
affected the lifeword of the participants with brain injury. The triangulation of data identified
the similarities and differences of people with brain injury and mothers and wives of people
with brain injury and professionals working in the field of brain injury. The voice of the
participants is presented with numerous direct quotations. The moral and the social model of
disability outlined in Chapter 3 can be seen to influence the four negative overarching themes,
however these themes did not populate the talk-about cards.

Chapter 8 powerfully demonstrates that for the individual with brain injury, brain injury may
not be all bad. This chapter provides valuable information about factors that have had a
positive effect on the lives of the participants. Once again direct quotes are used to both typify
and explain categories induced from the analysed transcripts. These positive themes did not
directly populate the talk-about cards, and were not represented in body-object studies
reviewed in Chapter 3. These themes however link to the social model of disability, body-
subject studies reviewed in Chapter 4 and information about education in Chapter 5.

Chapter 9 discusses and reconnects the findings from chapters 7 and 8 with the literature
introduced in the first five chapters. Firstly the chapter discusses factors that had a negative
impact on the participants’ including their fear, loss of status, the difficulties associated with
learning, rehabilitation and medical terminology. Secondly the chapter discusses factors that
had a positive impact on the participants including the many things that can help people with
ABI to feel and fare better, and that improved knowledge and understanding can assist people
them to understand. Thirdly the research tool ‘Keys to the ABI Cage’ and the method
employed is critically discussed and comments from the participants show the reaction to
being involved with this interview and learning tool.

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