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A Hermeneutic Inquiry of Aboriginal Families' Meaningful World of Caring, Ageing and Dementia

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A Hermeneutic Inquiry of Aboriginal Families' Meaningful World of Caring, Ageing and Dementia ‘Between Shadow and Light’: A hermeneutic inquiry of aboriginal families’ meaningful world of caring, ageing and dementia Rachelle Arkles MA (Social Science), Grad Dip (Media Studies) Thesis submitted in fulfilment of the requirements for the Degree of Doctor of Philosophy School of Public Health and Community Medicine University of New South Wales Sydney Australia August 2014 CONTENTS LIST OF TABLES .............................................................. vii LIST OF FIGURES ............................................................ vii LIST OF APPENDICES .................................................... viii ORIGINALITY STATEMENT ............................................ ix ACKNOWLEDGEMENTS ................................................... x ETHICS APPROVAL ........................................................ xiii Chapter One: Introduction to the study ............................................ 1 How the research begins ..................................................................................... 2 The dementia experience in studies of Aboriginal and Torres Strait Islander Australians .................................................................................. 4 Shifting the interpretive lens .............................................................................. 7 The study’s initial research question .................................................................. 8 A study within a study ......................................................................................... 9 The complexity of the research space ............................................................... 10 The study’s research problem ........................................................................... 12 Methodology and approach .............................................................................. 12 Methods ............................................................................................................. 13 Researcher motivation ...................................................................................... 14 My professional life........................................................................................ 14 Personal and professional values .................................................................. 14 Turning the gaze inwards .............................................................................. 15 Significance and contribution ........................................................................... 16 Empirical research ......................................................................................... 16 Existential practice ........................................................................................ 16 Conceptual contribution ................................................................................ 16 Outline of chapters ............................................................................................ 17 ii Chapter Two: Ontology and research: how ‘being-in-question’ changes the shape of the research inquiry ........................... 19 Introduction ...................................................................................................... 19 Part A. Ontology and research: the language of “within-ness” in Martin Heidegger .................................................................................... 21 Beginnings ..................................................................................................... 21 ‘Being-there’ ................................................................................................... 22 ‘World and worldliness’ ................................................................................. 24 The ‘ordinary everyday’ ................................................................................. 25 Disruption ...................................................................................................... 26 Anxiety, angst and care .................................................................................. 27 Authentic and inauthentic ‘being’ .................................................................28 Presence, absence and ‘unconcealment’ ....................................................... 29 Being-in-question: a stance for research....................................................... 31 Part B. ‘Being-in question’ in the practice of research ..................................... 31 Introduction ................................................................................................... 31 Entering into research: from expectation to dwelling in disorientation .......................................................................................... 32 Entering in: from disorientation to reframing ..............................................38 The generative space of ‘being-in’ question .................................................. 39 Part C. Ontological reflexivity in ‘lived experience’ research: significance and ambiguities .................................................................. 40 Introduction .................................................................................................. 40 Between the universal and the historical ...................................................... 42 Being, non-being and becoming .................................................................... 44 The times in which we live ............................................................................. 46 Summary and conclusion of the chapter .......................................................... 47 Chapter Three: Methodology and research as a ‘lived relation’: self, other, and ‘between’ ........................................................... 48 Introduction ..................................................................................................... 48 Part A. Encountering an(other) in a post-colonial research space .................. 50 Introduction ................................................................................................... 50 Intersubjectivity in the phenomenological tradition .................................... 52 iii The boundaries of ‘self and other’ ................................................................. 56 The lived relation of research ........................................................................ 59 Part B. The colonial legacy and contemporary public health & research practice ..................................................................................... 60 Introduction .................................................................................................. 60 The colonial legacy ......................................................................................... 61 The contemporary research landscape .......................................................... 62 The discomforting space of public health research ....................................... 64 A workshop .................................................................................................... 66 Working the space of ‘discomfort’ ................................................................ 68 ‘Fight’, ‘flight’ and ‘facing up’......................................................................... 69 Reflexivity between experience, disruption, theory and practice ................. 71 Part C. Dementia as a ‘lived relation’: self, other and ‘between’ ...................... 73 Introduction ................................................................................................... 73 Dementia as brain disease ............................................................................. 75 Dementia and personhood ........................................................................... 80 Dementia and narrative .................................................................................83 Summary and conclusion of the chapter ......................................................... 86 Chapter Four: Narrative disclosure: the interview as an encounter in meaning-making ................................................................. 88 Introduction ..................................................................................................... 88 Anticipation .................................................................................................. 89 Part A. ‘Disclosure research’ as a form of knowledge ....................................... 91 Towards a feeling of openness in research: experience and meaning as ‘data’ ..................................................................................... 93 The stance of the researcher .......................................................................... 94 The body’s place in knowing .......................................................................... 95 The embodied location of the researcher-scientist ....................................... 97 Embodiment and the lived relation: tensions of difference ......................... 99 Modes of reasoning in research: ‘deductive’, ‘inductive’ and ‘abductive’ .............................................................................................. 100 The philosophical underpinnings of ‘disclosure research’: Heidegger, Gadamer, Ricoeur ............................................................... 103 iv Part B. Entering into the circle of care: the significance of ontological stories..................................................................................................... 107
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