Developing a Narrative Approach to Healthcare Research

Viv Martin

• Publisher: CRC Press
• Year: 2018
• ISBN:
  9781315357348
• Edition: 1
• Topic: Medicina
• Subtopic: Salud pública, administración y atención

Patients' perspectives on their experiences of illness and treatment are increasingly valued by the medical profession as a source of information to enhance professional development, peer support and the quality of care provided. This book explores the development of an in-depth, relational and reflexive approach to narrative inquiry, drawing on counselling and arts-based approaches to researching accounts of illness. The significance of patient stories is explored through narrative research conversations with people whose personal accounts of a range of conditions provide powerful insights into the impact of illness on identity, life stories and the experience of patienthood. It offers suggestions for using narrative methods in medical education and practice to help professionals to both attend to patients' narratives and reflect on their own stories. Developing a Narrative Approach to Healthcare Research will be of interest to educators, practitioners, students and researchers in healthcare and the social sciences. 'I will recommend this book to my students; I hope other healthcare professionals will do the same and that some, like me, will go on to explore how narrative and story can be harnessed to both explore experience and to teach within healthcare.' - from the Foreword by Karen Forbes 'I would recommend this book to everybody who is involved in caring for people who suffer serious illness - whether they are professionals, family or friends. I also recommend it to social scientists and health professionals who want to conduct research in ways that capture the richness of peoples' lived experience.' - Kim Etherington, Professor of Narrative and Life Story Research, University of Bristol, UK.

PART I

Introduction

Chapters One to Five focus on the five illness stories. Each chapter, however, is not the illness story of each person: clearly, none is definitive, complete or unequivocal. The stories don’t tell everything—nor indeed can they tell everything, for as Winterson expresses it, ‘There is no everything. The stories themselves make the meaning. The continuous narrative of existence is a lie. There is no continuous narrative, there are lit-up moments and the rest is dark’ (p. 134).

While each of the chapters is relatively self-contained, like all stories, they have spaces: they are partial and incomplete. Each one is selective: one version, selected by each narrator, told from a perspective and represented by me (though in consultation with the storytellers). They hold tangents of intersecting storylines, fragments of other people’s stories and touch on untold stories. They draw on culturally available storylines, or oft-told personal stories, as well as others that lie at the boundaries of availability. In Part Two, I bring an alternative perspective to my representation of these stories, which will ‘light-up’ experience differently.

Winterson, J. Lighthousekeeping. London: Fourth Estate; 2004.

CHAPTER 1

An autoethnographic introduction

As I have indicated in the Preface, the origins of this book and the research on which it is based lie in my experience of serious illness and neurosurgery in 1994. It was these events that led me to undertake a PhD researching narratives of illness and its impact on identity construction. Prior to my illness, I had worked as a teacher and as a counsellor; however, my experience of life-threatening illness and disability was to lead me into territory I could not have foreseen. In order to account for, and to make explicit, my positioning in relation to the stories in this book and to the particular narrative methodology I developed, I shall tell my own story. In doing so, I aim to contextualise the relational and intersubjective stance I take throughout the book.

There is a sense in which research, for many of us, has its roots in our autobiographies and our need to make sense of experience through both prospective and retrospective exploration: an unceasing need for exploration that T.S. Eliot captures in his poem ‘Little Gidding’.¹ Indeed, Bochner² challenges ‘the myth that our research is divorced from our lives, that it has no autobiographical dimension, that what we do academically is not part of how we are working through the story of our own life’. Writers from across the social sciences, from disciplines such as anthropology,^3,4 counselling and psychotherapy,^5,6 education,^7,8 and sociology^9,10,11,12 similarly acknowledge the links between life experience and research interests: the relationship between researcher as embodied, socially embedded, interacting individual, and as inherently value-laden. What I bring to this research project is a perspective that is informed by my life experience, concerns, interests and values.

Autoethnography is an autobiographical genre of writing which situates the personal within its social context by combining inquiry into a cultural phenomenon along with personal experience of that phenomenon and ethnographic reflection on it. In doing so, the embodied self of the researcher is recognised as a significant and inherent part of the research process. It is a genre which blurs disciplinary boundaries and is positioned between ethnography and autobiography. Ellis¹³ describes autoethnography as ‘research, writing, story, and method that connect the autobiographical and personal to the cultural, social and political’ (p. xix). Spry¹⁴ (p. 710) defines autoethnography as ‘a self-narrative that critiques the situatedness of self with others in social contexts’. There are a variety of approaches to autoethnography, ranging from those that privilege its autobiographical origins^15,16,17 to those emphasising the critical ethnographic study of self within culture (see Etherington,¹⁸ Sparkes,¹⁹ Speedy,²⁰ Spry²¹). This book is broadly autoethnographic in that it is an exploration of a particular social community. I use ‘community’ here in the sense of the Latin communitas, which refers to a grouping based on shared humanity and commonality of experience; in this case, those who have experienced serious illness and surgery. Since it is a community to which I also belong, there is an autobiographical dimension to my interest.

According to McLeod,²² the key approach to ethnographic research is ‘participant observation’ in which the researcher spends time ‘in the field’, immersed in the culture of a particular ‘community. He notes that it is an approach that ‘highlights the differences between researcher and researched’ and that ‘this emphasis on difference and cultural distinctiveness raises the question of how far it is possible for someone to understand the experience of others’ (p. 65). There is clearly a fundamental question here about the nature of lived experience and the extent to which any of us can fully know and understand the subjectivities of another person. Questions about uniqueness and difference, empathy and identification will be addressed more fully later in this book, but for the present, I want to suggest that my ‘insider knowledge’ of serious illness gives me some access to and understanding of the illness community, which bridges something of the difference between researcher and researched and recognises our shared humanity; I am positioned as co-participant as well as researcher and belong to the community I am researching. Church²³ (p. 3) emphasises the social dimension of the subjective and describes how in her work with ‘psychiatric survivors ... the realities of genuine engagement made it virtually impossible not to take up subjectivity’. Likewise, to situate myself solely as counsellor-researcher would be to situate Pat, Jan, Jim and Yasmin as ‘other’, rather than to acknowledge the place of my own autobiography in this research project and in my relationships with them.

A Heuristic Journey

At a gathering in 2003 with my research supervisor, Kim Etherington, and three of her other research students, we were invited to tell our ‘research stories’.²⁴ It was a profound and moving experience; and one that affirmed for me something I have known for a long time, but also that I forget time and time again. It was the most powerful reminder of my deeper knowledge that whatever we experience in life is a stage in the process leading us to where we are and who we are now. We had all taken very different routes, and none of us could have known in advance where those routes were leading. That day, at Kim’s house, our particular paths crossed, and in their crossing, reaffirmed for me the validity of each person’s path, and reminded me that what we bring to research is fundamentally connected with who we are as persons.

At around the same time, while watching the film The Matrix²⁵ with my daughter, we both noticed the line, ‘There is a difference between knowing the path and walking the path’. It would not have occurred to me to venture into research. It was not something I had planned; the path I have taken has been the result of life events and choices that have led me in this direction—not a direction I could possibly have foreseen—but one that makes sense to me retrospectively.

The origins of heuristic research lie in hermeneutics and in Gadamer’s notion of the ‘horizon of understanding’, which refers to our pre-understandings, or assumptions. Hermeneutics involves a dialogic relationship between the researcher and the ‘text’ or field of inquiry to arrive at a ‘fusion of horizons’²⁶ (p. 290) where the aim is to bridge the gap between the world of the interpreter and the world of the interpreted. As McLeod²⁷ writes:

Every act of hermeneutic understanding begins with a pre-understanding which orients the inquirer in relation to the text or topic. One of the tasks of the hermeneutic scholar is to become aware of and reflexively to explicate this pre-understanding in a way that creatively feeds in to the process of understanding itself. (p. 23)

However, Heuristic Inquiry as developed by Moustakas refers to a particular form of phenomenological investigation into human experience. It is an approach that requires the researcher’s personal connection to the topic and willingness to engage actively and deeply with it. Moustakas²⁸ writes, ‘The heuristic process is autobiographic, yet with virtually every question that matters personally there is also a social - perhaps universal - significance’ (p. 15). He describes the beginnings of heuristic inquiry in terms that are reminiscent of a quest, and writes:

I begin the heuristic journey with something that has called to me from within my life experiences, and something to which I have associations and fleeting awarenesses but whose nature is largely unknown. In such an odyssey I know little of the territory through which I must travel. (p. 13)

The nature of this journey, then, is that it seeks to illuminate a topic that has personal significance for the researcher and also has wider human/social implications. I am aware of how profoundly and how broadly my personal history influenced my choice of research topic as well as the evolution of the methodology I used; in this chapter, I aim to show how the particular path I have travelled has informed my research interests as well as the underlying philosophy and values which underpin my methodological choices. The research on which this book is based was part of my own quest to understand those ‘associations and fleeting awarenesses’: a quest which involves looking within, and also reaching outwards in community with others.

Writing Vulnerably

Behar²⁹ observes that ‘writing vulnerably’ requires us ‘to draw deeper connections between one’s personal experience and the subject under study’ and ‘a keen understanding of what aspects of the self are the most important filters through which one perceives the world and, more particularly, the topic being studied’ (p. 13). In telling my ‘story’, I aim to convey a sense of my positioning in relation to this project; a personal perspective on my epistemological and ontological assumptions that will serve as a context for the reflexive stance I aim to take throughout the book.

In the introductory chapter to Disrupted Lives: how people create meaning in a chaotic world, Becker³⁰ tells her own stories of living with disruption, and of how, despite being trained in an era where objectivity was the main goal and principal value of the social sciences, she realised that personal experience was at the heart of her intellectual interests. She writes, ‘My studies of disruption in people’s lives have been fuelled by my lifelong efforts to create a sense of continuity in my own life’ (p. 8). She gives three reasons for telling her own stories: firstly, they illustrate the social and cultural context of disruption; secondly, her experience of asthma in which she ‘felt the chaos of disruption at a visceral bodily level’ sensitised her to the embodied nature of distress and the social constraints that ‘heighten the difficulty people have in giving voice to bodily disruptions’³¹ (p. 11); and thirdly, her story ‘contained certain elements of narratives of disruption’ that appeared in others’ stories, thus conferring a personal ‘moral authority’³² (p. 12). I tell my own stories here in order to offer testimony, bear witness,³³ and take a kind of moral responsibility for my place in this book.

Cupboard Under the Stairs

On the day I started to write this account of my research journey, Tony, my husband, had decided to empty the cupboard under the stairs in order to gain access to the stair above, which needed repair. This involved removing the drawers from a filing cabinet in there. As I sorted through the contents, I foun...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Foreword
• Preface
• About the author
• Acknowledgements
• Dedication Page
• Part I: Introduction
• Part II: Introduction
• Part III: Introduction
• Index