Phenomenology is the study of the social world or, rather, the ‘lifeworld’ as it is encountered by individuals. The lifeworld can be understood as the world that is common to an individual or group, and is constituted by familiar systems of meanings and language (Moran and Mooney, 2002). Taking a phenomenological approach in research involves looking at peoples’ lived experience: how they make sense of the world around them, what they do within this world, and how they understand what they do (Benner, 1994). Phenomenology is not concerned with trying to discover the facts of a phenomenon, but seeks to describe the quality of an experience in all its fullness, as it is told to us (Van Manen, 1997). Adopting a phenomenological perspective for this study therefore allows us to focus upon how different people make sense of their donation experiences, the practices they enact around this process, and how ethnicity is made sense of and constructed within donation contexts.
In its historical context, phenomenology is focused upon the philosophical nature of experience, as a pre-reflective entity. One of the founders of this approach, Edmund Husserl, believed phenomenology to be the study of the lifeworld “as it is in itself” (Husserl, 1981: 12). Husserl developed his philosophy as a way of demonstrating a crisis in the positivist tradition of the European objective sciences, which tried to see the world as if it were a totality, therefore leaving out the specificity of experience. For Husserl, objects in the world are given “purely in consciousness” (Moran and Mooney, 2002: 62), and can be distinguished by focusing upon what we access in our pure reflection. In this sense, the phenomenologist is tasked with “bracketing” her/himself from her/his pre-existing experience to go “back to things themselves” (Husserl cited in Moran, 2000: 9). The body is therefore understood to mediate between object (the world) and consciousness (ideas
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about the world), undermining the Cartesian mind/body dualism (Laverty, 2003). Later work by Merleau-Ponty (1962) was to take this idea further and emphasise the corporeal nature of experience, referring to the way in which the world (and experience of the world) is always embodied within the perceiver (Moran, 2000).
Husserl’s phenomenology was subsequently taken up by the philosopher Martin Heidegger (1967), who developed a theory of hermeneutic phenomenology. This differed from Husserl’s approach, in that it takes experience and its interpretation as the point of departure. For Heidegger, in contrast to Husserl, it is impossible to separate our lived experience of the world from the (historical) context in which we encounter it (Laverty, 2003). This he conceptualised as being-in-the-world (dasein): where experience and things are mediated by, and thus are a product of one’s specific position, or background (Koch, 1995). The world is therefore interpreted by individuals, rather than pre-reflexively experienced. Influenced by Heidegger, Hans-Georg Gadamer later emphasised an ongoing process of interpretation as the key to understanding the world. For Gadamer (2004), there are two ‘senses’ of interpretation. In its original form, interpretation is about highlighting what is already there, but which may be concealed in its everyday appearance. The second level involves interpreting the meaning that we have revealed (Van Manen, 1997). In this sense, all description is ultimately interpretation, since in describing the world and its objects we have already mediated between it and ourselves.
To phenomenologically research organ donation and ethnicity then means to aim my gaze towards experiences of the donation encounter, and draw attention to the meaning of these experiences and the practices around them (Van Manen, 1997). At the same time – taking a hermeneutic phenomenological perspective – it also involves taking into account the settings in which organ donation occurs and the historically situated backgrounds of my participants. The basis to such lines of inquiry can be traced in the application of the
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philosophy of hermeneutic phenomenology to a social science methodology, which more recent thinkers have taken up, as I describe below.
The researcher as professional stranger
In his seminal essay, The Stranger (1944), Alfred Schutz was the first to make an explicit link between phenomenology and its potential use in the context of a social science methodology. For a researcher to understand how people operate, Schutz argues that it is important for them to firstly forego their own familiar frameworks of reference. This is to avoid interpreting phenomena along the lines of “thinking as usual” (Schutz, 1944: 502): where one understands the research topic in the context of their own, rather than others’ understanding of the world. Schutz describes this process using the metaphor of the immigrant, whereby the “recipes” (1944: 501) – such as appropriate behaviour and modes of communication – for conducting oneself in a strange environment are not yet known. As such, the immigrant must go about learning, adopting, and integrating the “new cultural pattern” (Schutz, 1944: 504), so that they may actively take part in their new ‘community’. However, this recognition of the new “cultural pattern” takes a different form for the sociologist compared to the immigrant. According to Schutz (1944), the sociologist must act as a disinterested observer, with the intention of obtaining knowledge about peoples’ taken-for-granted behaviour, rather than necessarily integrating themselves within their ‘world’. Here, Schutz aligns the process of knowledge construction with an objective, scientific, approach, in his view that the researcher should objectively classify and analyse, in order to interpret peoples’ commonsense ‘recipes’. However, different from the natural sciences, Schutz (1967) also posed the notion of first and second order constructs in research on “self-reflecting humans” (Flyvberg, 2001: 32). First-order constructs refer to the common-sense thinking of research participants: how they make sense of the world around them. Social scientists’ interpretations of this are thus second-order constructs (Blaikie,
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2007). This means the researcher essentially “construct the constructs” (Schutz, 1967: 59) as a result of their own way of thinking about the world and in their orientation to their object of study. In interpreting the phenomenon of organ donation and ethnicity then, it is only through these first order constructs – entering the ‘world’ of those involved in organ donation – that would allow me to fully interpret the research problem (Aspers, 2009). It is through the experience of examining and interpreting such ‘worlds’ that the researcher must also acknowledge their own position and its influence on the study, in a reflexive research process, which I describe below.
Reflexively researching organ donation and ethnicity
Social research can never operate in a vacuum, and as researchers it is our position in the world which lends us our research stance (Moss and Dyck, 2002). In the context of a phenomenological approach, Emmanuel Levinas (1969) explicitly linked the philosophy to an ethics of being. This he articulated in terms of our relationship with the ‘other’ (Moran, 2000). In research, the ‘other’ encompasses the research participants and settings, and the process involved in acknowledging somebody’s world on an individual level, rather than simply placing them into categories (Wild, 1969: 13-14) – as past research into organ donation and ethnicity has done by its focus upon ‘BME’ ‘communities’. It also includes being aware of how meaning is constructed between researcher and researched (Finlay, 2006). In so doing, the researcher is able to achieve a type of objectivity, different to that of the disinterested observer (Schutz, 1944), in the research process.
A form of objectivity can be gained in phenomenological research by recognising our place in the world. Donna Haraway (1991: 183) advocated such a research, which recognises the importance of “partial perspectives”. She argued that a form of embodied objectivity can be achieved if we are open about our position in the world. Similarly, for Max Van Manen, to
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do phenomenological research it is vital to have a “strong orientation” (1997: 20) towards one’s topic. This effectively means that we live the research question by interrogating it within the context of our own existence (Van Manen, 1997: 43), and acknowledging how our own identity may impact upon the research process and its findings (Grewal and Ritchie, 2006). This I map out below, by scrutinising how my personal position on organ donation, and my own ethnic identity had bearing upon the study.
Prior to entering the research ‘world’ of organ donation and ethnicity, my own experience of donation and transplantation was limited to carrying a donor card, which I had done since I was a child; and knowing that a friend of my mother’s had died after two failed kidney transplants and years on dialysis. Upon beginning the study I was firmly prodonation: I saw no reason not to give my organs away after my death, since I had no specific belief in an afterlife. I had never given thought to the moral responsibility which backgrounded appeals for the public to donate their organs, which I described in chapter 1; or questioned the outcomes of transplant medicine for organ recipients as anything other than positive (despite the fact that transplantation had been far from successful for my mother’s friend). This stance meant that there was the potential for me to examine the research topic and analyse my data with the aim of ‘solving’ the shortage of ‘BME’ donor organs, thereby reproducing the blame discourse of current research and policy on the issue.
However, upon beginning the study I became immersed in research literature which went beyond scrutinising the donation attitudes of minority ethnic groups, and into ethnographic accounts of the medical practices of donation and transplantation, and the experiences of donor families and transplant recipients. I began to learn that, far from being a ‘miracle’ cure, transplant patients continued – in many ways – to be sick: with daily medication regimes and the constant risk of graft failure (e.g. Crowley Matoka, 2005; Kierans, 2005). In addition, I learnt that, for donor families, the experience of donating a loved one’s organs
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went far beyond their agreement to donate, and into the subsequent suffering engendered by the medical rules of anonymity, which largely kept donor families and recipients from forming relationships (Sharp, 2001; 2006). Whilst I remained convinced of my own desire to donate my organs after death, my views on transplant medicine began to shift as the study progressed, to eventually be characterised as one of ambivalence. I became acutely aware of the messiness involved in people’s decisions to donate, and how these cannot be reduced to questions of individual responsibility to donate organs for the sake of a wider ‘public’ good (see chapter 1). This stance is reflected in how I approached my analysis and presented the study findings, which draw attention to the ways in which donation decision- making is the product of heterogeneous actors and practices, rather than a simple matter of an individual’s/community’s ‘cultural’ beliefs about organ donation.
As my fieldwork progressed I experienced a similar process of awareness, in terms of how my relationship with the research topic and its subjects gradually developed. Initially adopting a hermeneutic phenomenological approach in my research involved me entering the (‘medical’) ‘world’ of organ donation, and the people who had experience of this ‘world’. Like Schutz’s immigrant, this world was initially strange to me: I was hearing stories about death and dying on a near daily basis, and visiting what was, at first, the daunting setting of the ICU – where organ donation usually occurs, and professionals involved in donation work. Often waiting on these wards for a member of staff, I could not help but feel overwhelmed at the seemingly monstrous machinery which looked to be engulfing patients. I also found myself wondering that if I, as a researcher of this world felt intimidated by this environment, then how must families who experience the death of their relative here, feel? This world, however, gradually became more familiar. Over time I was able to understand the once foreign-sounding medical terms such as ‘coning’ and ‘perfusion’, and my shock at tales of death dissipated. In addition, at the time of my research, UK donation services were
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undergoing huge organisational changes. One such change included the move of the donation nurses16 – who facilitate and manage the organ donation process – from their previous office bases into Intensive Care Units (ICU). Therefore, at the same time as I was learning the recipe knowledge used in the course of work around donation, donation nurses were also involved in their own process of learning the ‘thinking as usual’ of Intensive Care wards and their staff, to make workable new procedures around donation. In this way, the donation nurses were well placed as informants of these worlds (which I detail in part 3), since they were able to make explicit the ‘recipes’ they themselves were navigating.
As my interviews developed with members of Intensive Care staff and donation nurses however, I found myself becoming increasingly involved in this ‘world’ of death and potential life. To some extent, the later lack of strangeness of the stories I was hearing and the practices I was observing indicated that I had begun to take the donation process and the workings of health professionals – specifically the donation nurses, whom gave me access to the research world, and to whom I was therefore largely reliant upon for progressing my insights – for granted. In the words of Schutz (1944), I was in danger of beginning to ‘think as usual’ about my research phenomena. Rather than maintaining my distance, I was at risk of becoming too sympathetic towards the donation nurses, which had the potential to jeapordise my ability to critically analyse my data.
Kaufman (2005: 14) documents a similar existential process in her research on death and dying in American hospitals, recounting how she gradually came to view death and its organisation as “routine”. In the middle of my fieldwork, however, I was suddenly shaken out of my blasé attitude towards this ‘world’ with an exposure to the process of a potential donor referral in ‘real’-time. This happened when I overheard a phone call discussing the referral of a young man, whilst waiting to interview one of the donation nurses in her
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regional office. Asking about the case, I was told that a man had been brought in after a motor vehicle accident, and that the Intensive Care staff were about to carry out brain stem death tests before speaking to his family. Upon hearing this I felt sick. I realised the actuality of a donor process was being played out in real time and Iknew about a young man’s death before his family. Speaking about this to the donation nurse, she expressed her understanding, telling me how some cases “hit home” and make you realise the “strange” outlook on life which working in organ donation brings. Thus, I later came to understand my position in relation to my research subjects by gradually understanding their relation to this ‘strange’ world of donation, and my own imperative to maintain the strangeness of this world in my analysis, rather than take it too much for granted17.
In addition to outlining my stance on organ donation, it is also important to document how my own ethnic identity had bearing upon the research process. In initially approaching the topic of organ donation and ethnicity, in a reflection of the way in which the ‘problem’ has been commonly constructed, I felt uncomfortable with the idea that I would be doing research into minority ethnic ‘communities’. Looking back, I now realise that this was linked to my own mixed ethnic background. Positioning my identity in relation to this research is complex, since I see myself as a hybrid of backgrounds. On census forms I have always categorised myself as ‘Mixed: White and Asian’. My mother ticks ‘White British’ – her relatives being traceable to the North of England; my father, ‘Other’; and my sister ‘White British’ – her reasoning being that she looks ‘white’.
My father arrived in Bristol in 1954, aged 2, on a ship from Rangoon in Burma, accompanied by his mother and five siblings (this number would later multiply to seven). My grandfather had arrived in the UK some time before to find work, after he and my grandmother decided
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I further reflect on how I considered my relationship to the donation nurses when analysing my data in the epilogue.
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to remain British citizens and leave Burma after the dissolution of British rule in 1948. The reason for this, I am told, being that my grandfather, unlike my grandmother18, was not considered ‘Burmese’, being of Greek and German background. With the institution of a fledgling Burmese Government it became virtually impossible for him to find the work he was used to, as a ship’s captain. During childhood visits to my grandparents, I was always aware of a difference. This I later came to understand through my interpretation of the process of fitting-in which the family encountered as immigrants to the UK. This included them anglicising their family name; raising eight children in a three-bed council house; and my grandparents refusing to speak Burmese to their children once in England, for fear they would not otherwise integrate. My father was the only child who ended up at university, working his way through night school and day-release from a laboratory to eventually complete a PhD in Biochemistry and becoming a teacher. In contrast, my own upbringing in a suburban, largely ‘white’, town in an affluent area was what might be described as very middle class: with a teacher father and nurse (later lecturer) mother, a grammar school education, and straight into university to take up a Cultural Studies degree. As a result of my upbringing I have never felt part of a minority group as such, but my memories and sense of self will always be infused with my grandmother’s tales of Burma and my understanding of my father’s immigrant background.
My familial straddling of the ‘white’ British and immigrant worlds means that my position in this research study is far from ‘objective’ and value free. It provides me with a particular vantage point on the world, which I need to be aware of, by documenting how this impacted the research process. For example, my sensitivity towards the impact of being categorised as somehow different (such as in how ‘BME’ transplant patients and potential donors have been) has obviously influenced how I approached the research topic: as a
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My Burmese grandmother was herself a hybrid: a product of British imperialism. Her grandfather was an English Lord who illegitimately fathered a child with her Burmese grandmother.
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constructed, rather than a taken for granted ‘problem’. It also will have had consequences